SYMPOSIUM 2016 LAS VEGAS · 2018. 2. 16. · Welcome and thank you for attending Symposium 2016! Attendance has grown significantly in the past few years and once again, we are thrilled

SYMPOSIUM 2016LAS VEGASMarch 31 – April 3, 2016

TO OUR 2016 SYMPOSIUM SPONSORS!

Platinum LevelBaxalta Incorporated | www.baxaltahematology.com

Bayer | www.bayer.com

Biogen | www.biogen.com

Novo Nordisk | www.novonordisk-us.com

Octapharma | www.octapharma.com

Genentech | www.genentechhemophilia.com

Gold LevelPfizer Hemophilia | www.pfizer.com

Kedrion Biopharma | www.kedrion.us

Silver LevelCSL Behring | www.cslbehring.com

Bronze LevelAlnylam Pharmaceuticals | www.alnylam.com

HEMA Biologics | www.hemabio.com

2 Symposium 2016 | #HFA2016

#HFA2016 | Symposium 2016 3

TABLE OF CONTENTS2016 Symposium Sponsors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

Special Thanks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Welcome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Exhibit Hall & 2016 Exhibitors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Hotel Map & Meeting Rooms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

Meeting Transparency & Accountability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Registration & General Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Children & Teen Programming . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Thursday, March 31 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11-12

Friday, April 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13-15

Saturday, April 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16-20

Sunday, April 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

Advocacy, Inhibitor, Spanish, & Executive Director Track Schedules. . . . 22-25

2016 Annual Community Awards . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

Wellness Lounge Schedule of Activities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .26

HFA Volunteers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27

HFA Board of Directors & Member Organizations . . . . . . . . . . . . . . . . . . . . . . . 27-28

HFA Staff & Consultants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28

Our Sponsors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .29-38

BE SOCIAL! When you post pictures of Symposium be sure to use

#HFA2016

Follow us on Facebook, Twitter, and Instagram

@hemophiliafed


Symposium Planning Committee 2016

Kari Atkinson (Co-Chair)Linda Wyman-Collins (Co-Chair)

Bridget TyreyCarletha GatesChad Stevens

Christopher WalshDanielle Flores

Darcy ZwierDave Robinson

Dawn EvansDetrice Barry

Donnie Akers, Jr.Jan HamiltonJudy IgelmanLesa KaercherMaria Rubin

Sean HubbertTabby MayhanTracy Cleghorn

Our Symposium Partners & HostsNevada Chapter of NHF

Hemophilia Treatment Center of NevadaStaff at the JW Marriott Las Vegas Resort & Spa

Teen VolunteersDonald Douglas

Felix GarciaMatthew Gates

Dawn EvansSarah DeGrandpre

John NewmanKari AtkinsonBridget Tyrey

Danielle Flores

Children’s Program VolunteersMona Constantini

Carrie Koenig

Judy Igelman

Liliana Ruiz

Jan Hamilton

Justin Levesque

Gwendolyn Tatro

Milybet Cepeda

Anna Bell

Travel ArrangementsKR Events, Los Angeles, CA

ChildcareAccent on Arrangements, New Orleans, LA

Our special thanks to those who helped make this meeting possible!

HFA gratefully acknowledges a contribution of $50,000 from the Colburn-Keenan Foundation, Inc., which supported education travel grants spe-cifically for return attendees to Symposium! HFA was able to provide grants to more than 30 individ-uals and families through this generous donation. Thank you to everyone at Colburn-Keenan for al-lowing these attendees the opportunity to experi-ence yet another year at Symposium!

We’d also like to acknowledge these donors for their contributions to make travel grants possible:• Biogen• Baxalta Incorporated• Alnylam Pharmaceuticals

Welcome and thank you for attending Symposium 2016! Attendance has grown significantly

in the past few years and once again, we are thrilled to say that this year’s group is the largest

we have hosted to date! The support, engagement, and true sense of community is inspiring.

At HFA, we are honored that you choose to work with us to achieve our shared goals of being

a strong network of national community members.

Many thanks to our community in Nevada, the Nevada Chapter of NHF, and the Hemophilia

Treatment Center of Nevada who have all been strong allies as we planned and coordinated

this meeting in their state. HFA is absolutely delighted to be in sunny Las Vegas this weekend

to bring a glimpse of HFA’s programs and services to more than 1,000 individuals who are a

part of the bleeding disorders community!

“Our resilience brings us together during the hard times.”Our theme this year is “resilience.” As a community managing the ups and downs of chronic

bleeding disorders, our choice to be resilient guides us. Our resilience brings us together in

the hard times to support each other as a community and strive as self-advocates to get what

we need to improve the quality of life for our families.

Please join us at the luncheon, Friday, April 1st, as we honor just a few of the many individuals

who have contributed nationally to serving our bleeding disorders community. Join us to hear

important messages of hope and strength.

Thank you for joining us and have a wonderful Symposium experience!

Kimberly Haugstad, MBAExecutive Director

Tracy CleghornHFA Board President



Accredo (32)Accurate Rx Pharmacy (7)Advantage IC (50)Affinity Biotech (33)Alnylam Pharmaceuticals (44)American Thrombosis & Hemostasis Network (38)ARJ Infusion Services (4)AxelaCare Health Solutions (35)Baxalta Incorporated (28)Bayer Healthcare (27)Biogen (41)BioScrip (21)Brothers Specialty Rx (51)Coalition for Hemophilia B (45)Comprehensive Health Education Services (34)Cottrill’s SP (24)

CSL Behring (16)CVS Health (18)Diplomat (39)Emergent BioSolutions (37)Factor Support Network (47)Fidelis Specialty Pharmacy (48)Galen US Inc. (36)Genentech (42)Grifols USA, LLC (23)HEMA Biologics (30)Hemophilia Alliance (10)Hemophilia Federation of America (60) Hemophilia Treatment Center of Nevada (6)HFA Wellness Lounge (19)Homecare for the Cure (52)Hope For Hemophilia (49)Kedrion Biopharma (11)

Matrix Health Group (8)National Hemophilia Foundation (63) Nevada Chapter of NHF (62)NCHS (2)Novo Nordisk (14)Octapharma (13)Option Care (22)Paragon Healthcare Specialty (3)Patient Services Inc. (5)Pfizer Hemophilia (25) Plasma Protein Therapeutics Association (31)Soleo Health (17)Specialty Therapeutic Care (46)The Alliance Pharmacy (9)World Federation of Hemophilia (64)Y Medical Associates (53)

EXHIBITOR BOOTHS

EXHIBITOR HALL & MAP

EXHIBIT HALL HOURS

Thursday, March 31

5:30 p.m.—7:30 p.m.

Friday, April 19:00 a.m.—10:30 a.m.4:00 p.m.—6:00 p.m.

Saturday, April 212:00 p.m.—1:30 p.m.


HOTEL MAP & MEETING ROOMS


HFA’s annual educational Symposium is an incredible opportunity to interact, share, and gain information with 1,000+ attendee adults, children, speakers, volunteers, staff, and exhibitors. Here’s how to make the most out of your experience:

FOR CONSUMERS:• Attend/participate in as many sessions as you can.

Yes, Las Vegas is an exciting place, but budget your time wisely.

• Visit the Exhibit Hall and meet with pharmacy pro-viders, manufacturers, and others to learn about therapies, treatments, and services offered to our community. The Exhibit Hall is family-friendly, so ask questions and learn.

• When meeting exhibitors, ask open-ended questions to get as much detail as possible.

MEETING TRANSPARENCY & ACCOUNTABILITY

FOR EXHIBITORS: • Exhibit ONLY inside your designated booths in the

Exhibit Hall during posted hours.

• Be clearly identified by your nametag or uniform and introduce yourself as an Exhibitor.

• Do not offer raffles/prizes at your booths or collect attendee names (except for follow-up contact).

• Do not schedule private functions/events that conflict with scheduled HFA sessions/events.

• Do not attend support group meetings (e.g., peer rap sessions) unless you have, or care for someone who has, a bleeding disorder. General sessions are open to all.

HFA reserves the right to prohibit any conduct and activity that it deems inconsistent with its policies and purpose. If you see something that doesn’t seem right, please report it to HFA’s Registration/Informa-tion Booth, located in the Grand Ballroom Foyer.


Registration/Information Hours | Grand Ballroom FoyerThursday, March 31 | 9:00 a.m.—5:00 p.m.Friday, April 1 | 9:00 a.m.—5:00 p.m.Saturday, April 2 | 9:00 a.m.—12:00 p.m.

Infusion Suite | Cataluna B9:00 a.m.—6:00 p.m. dailyLinda (Lew) Wyman-Collins, BSN, RNC-NICBecki Berkowitz, RN

Note: Please call the number posted on the Infusion Suite door to schedule an after-hours infusion with a nurse.

Scooters and Wheelchairs | RegistrationSponsored by Baxalta IncorporatedThe hotel is wheelchair accessible. HFA has a number of wheel-chairs and scooters available during the meeting. Please stop by the registration desk for more information.

HFA AmbassadorsAmbassadors are community members who have graciously agreed to answer questions about HFA’s programs and ser-vices, and/or Symposium. You will find them throughout the conference with teal ribbons attached to the bottom of their name badges labeled “Ambassador”.

Mobile Charging Station Sponsored by AccredoPower up! A charging station for your mobile phone or tablet is available near the Exhibit Hall. Please be courteous to others and limit your use of the locker to just 30 minutes.

Conference Wi-FiSponsored by GenentechStay connected! Free Wi-Fi is available to attendees in the conference center. Check onsite signage for password and instructions.

Bottled Water StationsSponsored by BiogenBe sure to stay hydrated! Water is available for conference at-tendees. Water stations are located throughout the conference center and you can find a bottle in your conference bag.

Symposium Mobile AppDon’t forget to download our mobile app! Found in both the Apple Store and Google Play Store, you can plan out your schedule, look at the conference maps, post pictures, and more! You can download the app for free on your iPhone or Android smartphone by searching “HFA Symposium.” If you need help downloading the app, come to the Registration table and we’ll be happy to help.

Conference EvaluationsTell us about Symposium! Evaluations are available in both pa-per format and through our mobile app, so you can rate each session. This is YOUR conference, so we appreciate any feed-back you can give us about how to make it better.

Social MediaWe’re social! Be sure to post pictures throughout Symposium and join the conversation on Facebook, Twitter, and Instagram by using #HFA2016!

Ribbon Colors and MeaningsDuring the conference you’ll notice people wearing ribbons of various colors along the bottom edges of their name badges. Here is what they mean:

• Red | HFA Staff Member

• White | Exhibitor (and their name badges are green)

• Yellow | HFA Volunteer

• Teal | Symposium Ambassador

• Blue | Speaker

• Gray | HFA Board Member

• Orange | Symposium Committee Member

HFA Booth and FitFactor Wellness LoungeCome see us and learn more about HFA! Our booth is located in the Marquis Ballroom Foyer, right in front of the Exhibit Hall doors. Come by to meet our staff and board to learn about our programs and services. In addition, be sure to stop by our Fit-Factor Wellness Lounge (inside the Exhibit Hall) for a chance to learn about healthy activities for the whole family!

Spanish TranslationInterpreting equipment will be provided Friday-Saturday. Translators can be found at the back of the room at each session and are available for any questions or instructions on using the equipment.

Traducción al Español Se proveerá interpretación de Viernes a Sabado. Los traducto-res se encontraran en la parte de atrás del cuarto en cada se-sión y estáran disponibles para cualquier pregunta que usted pueda tener sobre las instricciones de cómo utilizar el equipo de traducción o audifonos.

Be Comfortable!Wear comfortable shoes since you will be doing a lot of walking throughout the conference. Also, bring along a light sweater since it can be a little chilly in the hotel’s meeting rooms.

REGISTRATION & GENERAL INFORMATION


CHILDREN & TEEN PROGRAMMIING

Children’s Program (infants, 6 months–12 years)

SPONSORED BY CSL BEHRING

Children will participate in fun activities using motor skills, games, stories, songs, and crafts.The professional caregivers on hand have been trained in the care of children with bleeding disorders. Please be sure your child is checked in on time so they may enjoy these activities!

Note: For safety reasons, we do not release the children’s itinerary in advance. The full program will be provided on-site for parents and available at registration.

DAY REGISTRATION (Leon) CHILDCARE Thursday, March 31 9:00 a.m.—11:00 a.m.* 11:00 a.m.—5:00 p.m.* 11:00 a.m.—5:00 p.m.

Friday, April 1 8:00 a.m.—12:00 p.m. 9:00 a.m.—5:00 p.m.

Saturday, April 2 Registration closed 9:00 a.m.—5:00 p.m.

*Inhibitor and Spanish-speaking families only

Reminder: Keep in mind the closing times of our childcare areas. Please be respectful of caregivers and pick up your children by closing time.

Teen Connection (ages 13–17)

SPONSORED BY GENENTECH

Teens can participate in a program centered on being advocates for themselves and for the bleeding disorders community. Throughout their sessions, teens will focus on developing self-assurance through team building activities to help them become better independent advocates. Participants will discuss the benefits and risks of disclosing a bleeding disorder as well as how ed-ucating others can benefit the entire bleeding disorders community.

Note: For safety reasons, we do not release the teens’ itinerary in advance. The full program will be provided on-site for parents and available at registration.

DAY REGISTRATION (Leon) TEEN PROGRAMThursday, March 31 9:00 a.m.—11:00 a.m.* 11:00 a.m.—5:00 p.m.* 11:00 a.m.—5:00 p.m.

Friday, April 1 8:00 a.m.—12:00 p.m. 9:30 a.m.—5:00 p.m.

Saturday, April 2 Registration closed 9:00 a.m.—5:00 p.m.

*Inhibitor and Spanish-speaking families only. There will be no teen program on Thursday, however teens are welcome to join the scheduled educational program.


BOARD OF DIRECTORS’

Board of Directors Breakfast | Grand Ballroom C7:30 a.m.—8:00 a.m.

Board Meeting | Grand Ballroom C8:00 a.m.—12:00 p.m.

Board Lunch | Grand Ballroom C 12:00 p.m.—1:00 p.m.

Advocacy Track | Grand Ballroom B1:00 p.m.—5:00 p.m.

GENERAL SESSIONS

Registration/Information Desk | Grand Ballroom Foyer9:00 a.m.—5:00 p.m.

Children’s & Teens’ Program Registration | Leon9:00 a.m.—11:00 a.m. Inhibitor and Spanish-speaking Families ONLY

11:00 a.m.—5:00 p.m. All other attendees

Inhibitor Track* | Grand Ballroom E11:00 a.m.—5:00 p.m.See page 22 for track schedule on Thursday*Pre-registration required

Spanish Track | Grand Ballroom A12:30 p.m.—5:00 p.m.See page 23 for track schedule on Thursday

Advocacy Track | Grand Ballroom B1:00 p.m.—5:00 p.m.See page 22 for track schedule on Thursday

Executive Director Track | Grand Ballroom B1:00 p.m.—5:00 p.m.See page 24 for track schedule throughout Symposium

Zumba (for women) | Motion Studio, Spa Aquae4:00 p.m.—5:00 p.m.Presenter: Wanda McLendon, Licensed Zumba Instructor

Physical activity helps to strengthen one’s muscles, bones, and joints. One of the many benefits of having a strong healthy body can be a reduction in the number of bleeding episodes an individual might experience. Come join us for a Zumba les-son and get first-hand experience of this total workout, com-bining all the important elements of fitness: cardio, muscle conditioning, balance and flexibility, boosted energy, and a serious dose of FUN!

Aquatic Therapy (for men) | Spa Pool, Spa Aquae4:00 p.m.—5:00 p.m.Presenter: Michael Zolonitsky, PT

Water isn’t just for drinking! Working out in the pool provides relief from joint strain while still providing resistance for muscles, making it a great place for people who have a bleed-ing disorder to build stronger bodies. Blood Brother Michael Zolotnitsky will teach some basic water exercise techniques while demonstrating a few simple exercises you can do on your own. This session is in a private pool and for adult men only, please.

Exhibit Hall + Wellness Lounge | Marquis Ballroom5:30 p.m.—7:30 p.m.

Wellness Lounge refreshments sponsored by Baxalta Incorporated, Bayer, Biogen, Genentech, Novo Nordisk, and Octapharma.

THURSDAY | MARCH 31


Family Game Night | MarbellaSponsored by Baxalta Incorporated8:30 p.m.—11:00 p.m.

Come join the fun! Play a few hands of Texas Hold ‘Em and make new friends (Don’t worry--no legal tender will be used!). Puzzles, board games, and much more will also be available for the entire family to enjoy!

Blood Vibrations Live* | Edge Lounge8:30 p.m.—11:00 p.m.Presenters: Shelby Smoak, Matthew Tache, Billy Conde Goldman & Justin Levesque

Join community musicians (both live and recorded) for an evening of relaxing music. This session will discuss music as a forum for creativity, expression, sharing and learning. Blood-Vibrations.org is an ongoing project centering on music creat-ed by people in the bleeding disorders community.

*Disclaimer: This session’s content is independent of HFA’s program

THURSDAY | MARCH 31

(Art Factor) Exhibit | Grand Ballroom FoyerSponsored by NCHSPresented by FOLX in collaboration with HFA Open throughout Symposium

(Art Factor), a program created by FOLX, is an annual exhi-bition at Symposium that features original work by those en-rolled in HFA’s Symposium Youth Program. This year, (Art Factor) will help kids create interactive artwork to be displayed on-site as a sculpture that will be called “Resilience Towers.” As you attend sessions or visit the exhibit hall, keep a look out for these displays.

Industry Dinner*: Biogen | Valencia Ballroom7:30 p.m.—9:30 p.m.

Please join Biogen for the “Food For Thought” dinner event. Drawing on Biogen’s history of innovation, discovery, and compassion, this program examines the power of hope and positive thinking. Inspirational speakers will be on hand to share their personal stories of hope in the face of adversity. It’s a great opportunity to get informed and feel inspired, all while enjoying some great food and connecting with others in the community.

*Note: This session’s content is independent of HFA’s program. Content and meal provided by Platinum sponsor. A meal is provided at no cost to attendees.


GENERAL SESSIONS

Industry Sponsored Medical Update Breakfast* | Valencia BallroomSponsors: Baxalta Incorporated, Biogen, Novo Nordisk, Octapharma and Christie Medical Holdings, Inc.7:00 a.m.—9:00 a.m.

Join us for breakfast and an opportunity to have detailed prod-uct discussions with the companies listed above who have new therapies/products on the market.

*Note: This session’s content is independent of HFA’s program. A meal is provided at no cost to attendees.

Rise & Shine: Zumba | Motion Studio, Spa AquaeFor adults or families; children must be accompanied by an adult.7:45 a.m.—8:45 a.m.Presenter: Wanda McLendon, Licensed Zumba Instructor

Dance your way into the day with Zumba! We all know that physical activity helps to strengthen one’s muscles, bones and joints. One of the many benefits of having a strong healthy body can be a reduction in the number of bleeding episodes an individual might experience. Come join us for a Zumba les-son and get first-hand experience of this total workout, com-bining all the important elements of fitness: cardio, muscle conditioning, balance and flexibility, boosted energy, and a serious dose of FUN!

Rise & Shine: Yoga | Castilla ABFor adults or families; children must be accompanied by an adult.7:45 a.m.—8:45 a.m.Presenter: Corey Pierce, RYT

Back by popular demand! Tired of your same old fitness rou-tine? Looking for something that will help get you re-ener-gized and focused? Look no further! Join us for a gentle yet invigorating yoga workout! If you’re intimidated by the idea of taking a yoga class, worry no more. Yoga allows all individuals, even those with special physical considerations like chronic pain or fatigue, the opportunity to participate safely in, and benefit from, the practice of yoga. You can even try this gentle style of yoga using a chair for support. This series of move-ments and breath work will revitalize you and help strengthen muscles and joints and build flexibility. Try it out! Please wear comfortable clothing.

Thanks to a generous donation from Gaiam, the first 10 people to attend this session will receive their own yoga mat to take home with them!

Registration/Information Desk | Grand Ballroom Foyer9:00 a.m.—5:00 p.m.

Children and Teens Registration | Leon8:00 a.m.—12:00 p.m.

Health and Wellness at the Local Level | Marbella(ED Track: Intended Audience—EDs/ Member Org. Staff)8:30 a.m.—9:30 a.m. Presenters: Christie VanHorne, MEd, MPH; Michael Zolotnitsky, PT

Healthy Bodies Bleed Less! Let us help you reinforce this mes-sage at the local level. This session will start with an interac-tive activity that member organization staff can use at the lo-cal level. Following the activity, participants will discuss ways to implement health and wellness into their work.

(Art Factor) Exhibit | Grand Ballroom FoyerOpen throughout Symposium.

FRIDAY | APRIL 1


Exhibit Hall + Wellness Lounge | Marquis Ballroom9:00 a.m.—10:30 a.m.

Refreshments can be found in the Wellness Lounge and are sponsored by Baxalta Incorporated, Bayer, Biogen, Genentech, Novo Nordisk, and Octapharma.

How It Works: Program Planning at the Local Level | Marbella(ED Track: Intended Audience—EDs/ Member Org. Staff)9:30 a.m.—11:30 a.m. Presenters: Christie VanHorne, MEd, MPH; Kelly Waters, LCSW

This session will offer a review of the cornerstones of solid program planning. From program design to speaker recruit-ment and evaluation tips, we will help you plan that perfect event for your community and clue you in on HFA resources that can benefit your local group.

Small Groups Meet & Greet | See Group Info Below10:30 a.m.—11:15 a.m.Presenters: HFA Staff

Join us for a glimpse of some of the many ways you can be involved and take action! Meet HFA staff while learning how you can get involved and stay connected. These specific pro-gram area meet-and-greet sessions will allow you to connect with fellow Dads, Moms, Blood Brothers, and Blood Sisters. Our Symposium Ambassadors will also be available to help you learn how you can be involved and not miss out on other great Symposium sessions!

Families Welcome Session | Grand Ballroom A

Blood Brothers/Partners & Spouses Welcome Session | Grand Ballroom B

Blood Sisters Welcome Session | Castilla AB

Together We Are Resilient (Lunch)* | Grand Ballroom C-E11:45 a.m.—1:30 p.m.

Award Presenters: Kimberly Haugstad, MBA, Tracy Cleghorn

Each year during our welcome luncheon, HFA recognizes the service of several special individuals who have gone above and beyond to serve the bleeding disorders community. A list of awards and their descriptions can be found on page 25.

Panelists: “Bobby” Duc Tran, MD; Britnee Vieria; Dan Levy; Doug Rice; Moderator: Cazandra Campos- MacDonald

Following the awards presentation, a community panel will speak to this year’s theme of “Together We Are Resilient.” These inspiring stories will help to set the tone of Symposium as each individual shares their personal journey of resiliency and hope.

*A meal is provided at no cost to attendees.

Dear Addy LIVE! | Grand Ballroom A-B1:45 p.m.—2:45 p.m.Panelists: Katie Verb, JD; Randi Clites; Wendy Owens, MA; Moderator: Janel Johnson-Momanyi, MPA

You’ve got questions? HFA tries to answer! This interactive panel will feature a discussion in which we will field questions from the live audience and via Twitter about advocacy, policy, insurance, and so much more. As many school teachers have said, “If you have a question, then certainly someone else has the same question,” – this is the session to learn about a vari-ety of topics important to the bleeding disorders community. Use #AddyLive to participate and ask questions on Twitter!

Break | Grand Pre-Function Sponsored by HEMA Biologics2:45 p.m.—3:00 p.m.

Remembrance Service | Grand Ballroom C3:00 p.m.—4:00 p.m.Facilitator: Carletha Gates, PhD

Join us as we remember and celebrate those in our communi-ty who are departed. We recently asked the bleeding disorders community to submit names of their departed friends and loved ones to be included in the ceremony slide show. Please come and share as we commemorate the trailblazers of our community.

Exhibit Hall + Wellness Lounge | Marquis Ballroom4:00 p.m.—6:00 p.m.

FRIDAY | APRIL 1


FRIDAY | APRIL 1

Industry Dinner*: Baxalta Incorporated | Valencia Ballroom6:00 p.m.—8:00 p.m.

Join Baxalta for a Light the Night Reception with fun and education for the whole family!


Stop the Bleeding Season 6 Premiere! | Grand Ballroom A8:15 p.m.—9:30 p.m.Presenter: Patrick James LynchStop the Bleeding!

Join community activist and actor Patrick James Lynch and the team from Stop the Bleeding! for the premiere screening of an episode from the brand new season, highlighting the value of summer camp for people with bleeding disorders. This en-tertaining session is appropriate for the whole family. To view the episode, visit STBhemo.com

Note: This session’s content is independent of HFA’s program and provided by Believe Limited.

Moonlight Yoga | Motion Studio, Spa Aquae (Adults Only)8:30 p.m.—9:30 p.m.Presenter: Corey Pierce, RYT

Unwind from the day and quiet the body and mind with a peaceful evening yoga session. Join us as we move through gentle poses and breath work that will strengthen muscles and joints while also calming the mind. Yoga allows all indi-viduals, even those with special physical considerations like chronic pain or fatigue, the opportunity to participate safely in, and benefit from, the practice of yoga. You can even try this gentle style of yoga using a chair for support. Join us! Please wear comfortable clothing.

Thanks to a generous donation from Gaiam, the first 10 people to attend this session will receive their own yoga mat to take with them!

COTT Meeting | Grand Ballroom D8:30 p.m.—10:00 p.m.

Note: This session’s content is independent of HFA’s program. It is hosted by The Committee of Ten Thousand (COTT).


GENERAL SESSIONS

Industry Breakfast*: Bayer | Valencia Ballroom7:00 a.m.—9:00 a.m.Presenter: Mae Jemison, MD

You Don’t Have to be an Astronaut to Make Science Make Sense (but Just in Case, We’ve Invited One!)

Have you ever wondered why stars shine? Or why dry ice creates a fog instead of a puddle when it melts? Then join Bayer for a morning of wonder and amazement, featuring Dr. Jemison, the nation’s first African-American woman astronaut and the long-time ambassador and advocate for Bayer’s award-winning educational program, Making Science Make Sense. Experience the spectacular wonders of science by participating in hands-on experiments that will entertain, engage, and educate you while you discover the many ways that science touches almost every dimension of our daily life.

Note: This session’s content is independent of HFA’s program. Content and meal provided by Platinum sponsor. *A meal is provided at no cost to attendees.

Rise & Shine SessionsSponsored by Kedrion Biopharma and Pfizer Hemophilia

Aquatic Therapy (adult women) | Spa Pool, Spa Aquae7:45 a.m.—8:45 a.m.Presenter: Michael Zolonitsky, PT

Water isn’t just for drinking! Working out in the pool provides relief from joint strain while still providing resistance for muscles, making it a great place for people who have a bleed-ing disorder to build stronger bodies. Blood Brother Michael Zolotnitsky will teach some basic water exercise techniques while demonstrating a few simple exercises you can do on your own. This session in the private spa pool is for adult fe-males only, please.

Zumba | Motion Studio, Spa Aquae*7:45 a.m.—8:45 a.m.Presenter: Wanda McLendon, Licensed Zumba Instructor

Physical activity helps to strengthen one’s muscles, bones and joints. One of the many benefits of having a strong healthy body can be a reduction in the number of bleeding episodes

an individual might experience. Come join us for a Zumba les-son and get first-hand experience of this total workout, com-bining all the important elements of fitness: cardio, muscle conditioning, balance and flexibility, boosted energy, and a serious dose of FUN!

*For adults or families; children must be accompanied by an adult.

Yoga | Castilla AB*7:45 a.m.—8:45 a.m.Presenter: Corey Pierce, RYT

Back by popular demand!! Tired of your same old fitness rou-tine? Looking for something that will help get you re-ener-gized and focused? Look no further! Join us for a gentle yet invigorating yoga workout! If you’re intimidated by the idea of taking a yoga class, worry no more. Yoga allows all individuals, even those with special physical considerations like chronic pain or fatigue, the opportunity to participate safely in, and benefit from, the practice of yoga. You can even try this gentle style of yoga using a chair for support. This series of move-ments and breath work will revitalize you and help strengthen muscles and joints and build flexibility. Try it out! Please wear comfortable clothing.

Thanks to a generous donation from Gaiam, the first 10 people to attend this session will receive their own yoga mat to take home with them!

*For adults or families; children must be accompanied by an adult.

(Art Factor) Exhibit | Grand Ballroom FoyerOpen throughout Symposium.

Information Desk | Grand Ballroom Foyer9:00 a.m.—12:00 p.m.

Breakout #1: Inhibitors: From Patient to Provider | Grand Ballroom B9:00 a.m.—10:15 a.m.Presenter: Duc Tran, MD

There is much to be learned about inhibitors in the hemophilia community. Dr. Tran will convey basic knowledge about inhib-itor development, the most common methods of tolerizing an inhibitor, and how to manage bleeding in inhibitor patients. Through his firsthand experience not only as a hematologist

SATURDAY | APRIL 2


but as an inhibitor patient himself, Dr. Tran will share the chal-lenges of living with an inhibitor.

Breakout #2: Insurance Trends | Grand Ballroom A9:00 a.m.—10:15 a.m.Presenter: Katie Verb, JD

During this presentation, Katie Verb will tell you about up-coming trends in the insurance world like changes in Med-icaid/Medicare that could migrate into the private market, developments in Exchange plans and how that relates to the community. She will also offer the audience ideas on possible advocacy opportunities.

Breakout #3: Mommy Bleeds Too! | Grand Ballroom E9:00 a.m.—10:15 a.m.Presenter: Elizabeth Christy

As women, we often put others first. We make sure the needs of our children, our partners, or our close friends are met be-fore our own needs. As a woman with a bleeding disorder, it’s especially crucial to take care of yourself and advocate for your own needs. Elizabeth Christy, author of the children’s book Why Does Mommy Hurt?, will share her own personal journey living with chronic pain, fibromyalgia, and autoimmune dis-ease. She will discuss how she advocated for herself through diagnosis and treatment and how feelings of guilt often crept in when managing her own chronic disorders. Elizabeth will also explain how she educated her child about her disorders as well as how she became involved in supporting other parents coping with chronic conditions. All women are welcome and encouraged to attend this session.

Breakout #4: The Power of Social Media | Grand Ballroom D9:00 a.m.—10:15 a.m.Presenter: Stephen Fitzmaurice, MPS

It’s easy to doubt the power of social media and to write it off as frivolous—that is, until you see the results! Building off of last year’s Symposium session, this interactive presentation will provide attendees with a step-by-step way to participate and network safely, while raising awareness as members of the bleeding disorders community.

Breakout #5: Von Willebrand Disease Standards of Care | Castilla AB9:00 a.m.—10:15 a.m.Presenter: Amber Frederizo, APRN, FNP-BC

Von Willebrand Disease (vWD) is the most common type of bleeding disorder, affecting an estimated 1% of the world’s population. VWD affects males and females equally. How-ever, because symptoms can be mild, many people affected have not been diagnosed. This session is for anyone, male or female, impacted by vWD and will take you from diagnosis to treatment.

Breakout #6: LGBTQ Rap Session | Leon9:00 a.m.—10:15 a.m.Facilitator: Justin Levesque, BFA

Join fellow members of the LGBTQ community as they share their experiences in this closed rap session.

This session is only open to those who identify as LGBTQ with a bleeding disorder. No industry employees are allowed, unless you have a bleeding disorder.

Break | Grand Ballroom FoyerSponsored by Alnylam Pharmaceuticals10:30 a.m.—10:45 a.m.

Expanding Our Knowledge: CHOICE Project Update & HFA Research Program | Grand Ballroom C 10:30 a.m.—12:00 p.m.Presenters: Wendy Owens, MA; Vanessa Byams, MPH; and Mike Soucie, PhD

We start this session with a big thank you to everyone who participated in the CHOICE Project. HFA and the CDC will share initial CHOICE data and our plans for co-analysis and publication of the results for the coming year. HFA will share updates on how we’ve already used the CHOICE data to improve our advocacy efforts and we’ll describe HFA’s new Research Program, which is community-focused, communi-ty-centered, and community-driven. In support of this new program and our efforts to keep us up-to-date on new research, the CDC will provide the latest information on the Zika virus and its potential impact on our community. To conclude the session, HFA will ask attendees where it should focus its next research efforts. Please attend and share your ideas on how HFA can best help you through our research efforts.

SATURDAY | APRIL 2


Express Lunch (Exhibit Hall + Wellness Lounge)* | Marquis Ballroom12:00 p.m.—1:30 p.m.*Sponsored by Kedrion Biopharma and Pfizer Hemophilia. Lunch is provided at no cost to attendees.

Enhanced Break | Grand Pre-Function 2:30 p.m.—3:30 p.m.Sponsored by Bayer

BLOOD BROTHERHOOD TRACK

Living Longer and Stronger: Aging with a Bleeding Disorder | Grand Ballroom E1:30 p.m.—2:30 p.m.Presenter: Annette von Drygalski, MD, PharmD

It is a time of immense positivity in the bleeding disorders community. With advances in treatment and care, men with bleeding disorders are living longer and more productive lives. However, aging men with bleeding disorders must keep other chronic health risks in check in order to maintain wellness and prevent other chronic conditions. In this panel discussion, at-tendees will have the opportunity to hear the perspectives of patients living with bleeding disorders and the issues they are currently coping with as they age. The remainder of the ses-sion, led by Dr. von Drygalski, will address common aging risk factors for men with bleeding disorders, treatment options, and the latest research on aging and bleeding disorders.

Treatment Concerns in Bleeding Disorders: HCV, Upcoming Products, and Pain | Grand Ballroom E2:45 p.m.—3:45 p.m.Presenters: Christopher Walsh, MD; John Reed, DPH; Kim Mauer, MD; Mark Antell; Paul Brayshaw, MPH

Effective treatment is a top concern for the bleeding disorders community. In this panel discussion, attendees will have the opportunity to learn about treatment options for the hepatitis C virus, upcoming factor products, as well as pain, with a spe-cial focus on non-opioid treatment options for pain. Attendees are encouraged to participate and ask questions during this panel discussion.

Blood Brotherhood Rap Session | Grand Ballroom E4:00 p.m.—5:30 p.m.Facilitators: A team of adult men with a bleeding disorder

Back by popular demand! Join this roundtable discussion with fellow adult men (18+) with bleeding disorders to connect, learn, and share experiences.

Only open to adult men with a bleeding disorder. No industry employees are allowed, unless you are also an adult man (18+) with a bleeding disorder.

BLOOD SISTERHOOD TRACK

Educating Providers. Changing Lives: An Introduction to the Foundation for Women & Girls with Blood Disorders (FWGBD) | Grand Ballroom D1:30 p.m.—2:30 p.m.Presenter: Kerry Funkhouser, EdD

Join the FWGBD as it describes the education it offers to pro-viders and introduces resources that you can share with your provider. Come see a demonstration of FWGBD’s NEW online directory of HTCs that serve women and girls with bleeding disorders and/or other blood disorders.

Women Who Bleed: Basic Overview of Why, What’s Affected, and How We Handle It | Grand Ballroom D2:45 p.m.—3:45 p.m.Presenter: RuthAnn Zisser, WHNP-BC, MS

Women with bleeding disorders come in all ages and sizes, with medical needs the same as other women. Learn about bleeding disorder basics and how they affect surgeries, medi-cation choices, lifestyle, and even what happens behind closed doors.

Blood Sisterhood Rap Session | Grand Ballroom D4:00 p.m.—5:15 p.m.Facilitators: A team of adult women with a bleeding disorder

Back by popular demand! Join this roundtable discussion with fellow adult women (18+) in the bleeding disorders community to connect, learn, and share experiences.

Only open to adult women: carriers, with a diagnosed bleed-ing disorder, or bleeding disorder symptoms. No industry em-ployees are allowed, unless you are also an adult woman who is also a community member and acting in that capacity.

SATURDAY | APRIL 2


SATURDAY | APRIL 2

PARTNERS & SPOUSES TRACK

Partners & Spouses Rap Session | Grand Ballroom B4:00 p.m.—5:30 p.m.Facilitators: Elaine Chan, MSW, MPH; Sharon Ingram, MA, HS-BCP, CWHC

Are you the partner or spouse of a loved one with a bleeding disorder? This session is for you! Join a roundtable discussion group with other partners and spouses to connect and share experiences.

Only open to partners/spouses of a person with a bleeding disorder. No industry employees are allowed, unless you are a partner/spouse of someone with a bleeding disorder.

FAMILIES TRACK

Raising Resilient Children | Grand Ballroom C1:30 p.m.—2:30 p.m.Presenter: Mark Borowski, MS

In keeping with the 2016 HFA Symposium theme, “Together We Are Resilient,” this session will explore how to raise re-silient children in the face of a bleeding disorder—and life in general. Longtime HFA Families presenter, Mark Borowski, returns to Symposium to share how parents can recognize and foster resilience in their children. Parents will learn how to help their children be more optimistic, determined and de-cisive, and to emphasize the benefits resulting from these and other personality traits.

Grow Up, Stand Up: Kids As Self-Advocates | Grand Ballroom C2:40 p.m.—3:40 p.m.

Panel: Elizabeth Christy; Justin Levesque; Brianna Collins; Carlos Ruiz; Moderator: Sonji Wilkes

A large part of growing up with a bleeding disorder is learning how to be your own best advocate, and as most parents know, kids watch our every move and model the behavior they see. Our panel will share what has worked for them in terms of dis-closure to peers, speaking up during healthcare visits, gaining independence, and how they gained ownership of their disor-der. Join us for this session on transitioning through life and hear how to encourage the next generation of bleeding disor-ders advocates.

Moms in Action Rap Session | Grand Ballroom C3:45 p.m.—5:00 p.m.Facilitators: A team of moms in the bleeding disorders community

Join other moms and mother figures in this open format, peer-led session where it’s safe to talk about what it’s like to raise a child with a bleeding disorder. HFA’s Moms in Action program has resources and seeks to increase connections about mothers. This is a session to learn more, take action, and get involved. Please join us – you’ll meet friends for life in this session.

This session is only open to mothers/mother-figures of a per-son with a bleeding disorder. No industry employees allowed, unless you also are a mom of someone with a bleeding disorder.

Dads in Action Rap Session | Grand Ballroom A3:45 p.m.—5:00 p.m.Facilitators: A team of dads in the bleeding disorders community

For fathers/father-figures raising a child with a bleeding dis-order, this session will be an open format that will be led by fa-thers from within the community. Participants will learn about HFA’s Dads in Action program and all the resources we have to offer. This is your opportunity to question, connect, and net-work with others. It’s a safe place to talk about what it’s like for you – the dad, daddy, father, and papa.

This session is only open to fathers/father-figures of a person with a bleeding disorder. No industry employees unless you are a dad of someone with a bleeding disorder.

SPANISH TRACK | PISTA ESPAÑOL

Track sponsored by Octapharma and Option Care.

Rap Session en Español | Andalucia4:00 p.m.—5:00 p.m.Presenter: Blanca Ramirez

HFA ofrece sesiones de apoyo a todos los participantes de nuestra comunidad para personas con problemas de sangra-do. Esta sesion se ofrece con la intención de crear apoyo co-munitario y aumentar la unidad entre los miembros de nues-tra comunidad. Esperamos que venga preparado con algunas preguntas a las cuales usted quisiera obtener respuestas y preguntarlas a sus compañeros a cerca de como es vivír con problemas de sangrado.

Spanish Rap SessionHFA offers peer support sessions to all populations of the bleeding disorders community in an effort to build social


support and increase connectedness between community members to foster peer learning. Come to this session pre-pared with questions you’d like to pose to your peers about the ups and downs of living with a bleeding disorder.

YOUNG ADULTS TRACK

Powering Through (featuring NFL Cornerback, Josh Gordy) | Castilla AB1:30 p.m.—3:00 p.m.Presenter: Patrick James Lynch

Powering Through is a nationwide live speaker series for and about the bleeding disorders community with dynamic guests speaking on the topic of overcoming life’s challenges. Hosted by community activist Patrick James Lynch, this year’s panel features NFL cornerback and HOPE Foundation founder Josh Gordy! This session is open to all interested community mem-bers. Powering Through is produced by Believe Limited and sponsored by NCHS. PoweringThrough.org.

Part of the Young Adults track, but open to all community members.

Financial Finesse | Castilla AB3:15 p.m.—4:15 p.m.Presenter: Mark Borowski, MS

As a person with a bleeding disorder, your top priority is your physical health, but what about your financial health? If you are a young adult with a bleeding disorder just finishing col-lege or embarking on your career, it is important that you are well educated about your finances. In this session, attendees will learn tips for creating a budget, building an emergency fund, learning to live within your means, using credit cards responsibly, and much more. Attendees are encouraged to in-teract and ask questions during the session.

The Patchwork Series: Where Do I (or We) Fit In? | Castilla AB4:30 p.m.—5:30 p.m.Presenter: Connie L. Montgomery, OTR-L Retired

Bring your individuality to the table and engage in some fun, challenging conversation and activities that will allow every-one to see how different people with different perspectives can come together like the fabric of a patchwork quilt. Through team building activities, attendees will learn how to use their differences to work together, benefiting everyone in the bleed-ing disorders community.

EXECUTIVE DIRECTOR TRACK

Board Development | Leon(ED Track: Intended Audience—EDs/ Member Org. Staff)1:30 p.m.—3:30 p.m.Presenter: Christie VanHorne, M.Ed, MPH

What does your ideal board look like? Join us to discuss recruitment, board roles, meeting tips, and creative ideas to use for board engagement and productivity.

Fundraising Development | Leon(ED Track: Intended Audience—EDs/ Member Org. Staff)3:30 p.m.—5:30 p.m.Presenter: Sharon Meyers, CFRE; Ann LeWalk, LLPC

This session will share the building blocks of developing an ideal fundraising environment. Learn how to tell your story effectively, create a funding roadmap, break through personal barriers, and manage stress.

GENERAL

Break5:30 p.m.—6:30 p.m.

HFA Final Night Event*: Sponsored by Novo Nordisk | Valencia Ballroom6:30 p.m.—11:00 p.m.

Join us for fun and games at the Midway! Try your luck at the games and win prizes! Bring your appetite for carnival fare. Be amazed by a strolling magician and have a favorite balloon animal made just for you! The DJ will help us all get into the fun atmosphere of the carnival.

*A meal is provided at no cost to attendees.

SATURDAY | APRIL 2


SUNDAY, APRIL 3

GENERAL SESSION

Industry Breakfast*: Octapharma | Valencia Ballroom7:00 a.m.—9:00 a.m.

On the last the last day of the 2016 HFA Symposium you build your knowledge of the expanding landscape for the hemophilia A community. Learn more about these unique opportunities that will be presented as your journey continues into the future during this educational breakfast symposium.


IS MOBILE!SYMPOSIUM

Download the FREE app to:• View the agenda and schedule reminders

• Explore hotel maps and the exhibit hall

• Learn about the speakers, exhibitors, and sponsors

• Receive announcements and up-to-date event info

• Interact with other attendees in the app

• Share photos and comments in the activity feed

Available on the Apple App Store and Google Play Store!For more information: http://guide.hemophiliafed.org


ADVOCACY TRACK

THURSDAY, MARCH 31Federal Session: Overview of Executive Agencies | Grand Ballroom B1:00 p.m.—3:00 p.m.Panelists: James Romano; Katie Verb, JD; Vanessa Byams, MPH; Moderator: Deema Tarazi

The session will start with a detailed review of which federal agencies play a role in executing bleeding disorders policy, a discussion with federal policy experts about current feder-al legislation, followed by a panel discussion with represen-tatives from the Centers for Disease Control and Prevention (CDC), the U.S. Health Resources & Services Administration (HRSA), and Patient Services Incorporated (PSI).

Break3:00 p.m.—3:15 p.m.

Current State of the States | Grand Ballroom B3:00 p.m.—5:00 p.m.

Presenters: Adam Alver; Bill Speirs; Katie Verb, JD; Randi Clites; Stephanie Simpson; Stephen Fitzmaurice, MPS

The session will begin with a rundown of what HFA is finding with Project CALLS, followed by a discussion of state legis-lation that affects the bleeding disorders community, a pre-sentation on advocacy and social media, and a panel of state advocacy experts answering your questions.

INHIBITOR TRACK

THURSDAY, MARCH 31Note: This is a closed session for families with inhibitors only. Pre-registration is required. Track sponsored by Baxalta Incorporated, Kedrion Biopharma, Novo Nordisk, and Grifols.

Inhibitor Attendee Breakfast | Grand Ballroom E9:00 a.m.—10:30 a.m.

Attendees should register prior to breakfast.

Childcare | AndaluciaRegistration: 9:00 a.m.—11:00 a.m.Drop Off: 11:00 a.m.—11:30 a.m.

Welcome & Messages from Our Sponsors | Grand Ballroom E11:15 a.m.—11:45 a.m.

Lunch Pick-Up* | Grand Ballroom E11:45 a.m.—12:00 p.m.

*A meal is provided no cost to attendees.

When You Need a Helping Hand: HFA’s Inhibitor Support Program | Grand Ballroom E12:00 p.m.—12:15 p.m.Presenters: Angela Burton, MSW; Elaine Chan, MPH, MSW

Living with an inhibitor goes beyond just the medical diagno-sis of an antibody. Challenges arise because of the increased impact of having an inhibitor. HFA recognizes that inhibitor patients and families sometimes need a “Helping Hand” and in 2016 developed an extension of our long-standing emergen-cy financial assistance program specifically targeted to those who must deal with inhibitors. Our program coordinators and social workers will explain program details and how families can access this support when they need it.

Two Roads Diverged: Patient Journeys with Inhibitors | Grand Ballroom E12:15 p.m.—1:30 p.m.Presenters: Chip Hearn, Tom Sitzler, Adam Alver, Leland Smith; Moderator: Sue Geraghty, RN

Peer to peer conversations about what’s worked and what hasn’t are often the most powerful pieces of education fami-

ADVOCACY, INHIBITOR, SPANISH, & EXECUTIVE DIRECTOR TRACK SCHEDULES


lies with inhibitors can learn from. This panel of four inhibitor patients, ranging from young adults to more experienced men, will candidly share how they’ve moved from childhood into the adult world, and in some instances, even eradicated their inhibitor after years of a positive titer.

Break 1:30 p.m.—1:35 p.m.

(Breakout Option 1) When Your Joints Go Out More Than You Do: Joint Health for the Inhibitor Patient | Grand Ballroom D1:35 p.m.—2:35 p.m.Presenter: Sue Geraghty, RN

With an inhibitor comes repetitive bleeding into joints, which can cause permanent joint damage, chronic pain, and a re-duced quality of life. Longtime HTC and orthopedic nurse, Sue Geraghty will discuss the common joint health issues faced by inhibitor patients, how to prevent damage, and what standard treatments are offered for chronic pain, as well as an overview of the surgical interventions available for those with chronic joint problems.

(Breakout Option 2) But I Don’t Want To Go on a Guilt Trip! | Grand Ballroom E1:35 p.m.—2:35 p.m.Presenter: Dave Robinson, PhD, LMFT

During HFA’s 2015 Symposium Inhibitor Track, Dr. Robinson held a focus group to explore the impact of an inhibitor on the family unit and review the experiences surrounding diagno-sis and treatment. During this 2016 session, Dr. Robinson will discuss the findings from the focus group and will offer posi-tive coping mechanisms and skills for patients and families as they try to improve their inhibitor experience.

Break 2:35 p.m.—2:45 p.m.

The Road Ahead: What Does the Future Hold for Inhibitors | Grand Ballroom E2:45 p.m.—4:00 p.m.Presenter: Shannon Meeks, MD & Robert Sidonio, Jr., MD

What’s new (and upcoming) in inhibitor prevention and treat-ment? Two leading hemophilia physicians will discuss two recent studies that looked at inhibitor development and the merits of each study. Our experts will also give overviews of

several clinical trials that are currently enrolling inhibitor pa-tients while explaining the products associated with these tri-als and what questions families should ask when considering participating in a clinical trial.

Inhibitor Rap Session | Grand Ballroom E4:00 p.m.—5:00 p.m.

NOTE: This closed session, ONLY for patients and immedi-ate family members/caregivers of those with inhibitors. It will feature an open format that is peer-led and moderated. This is the inhibitor community’s opportunity to speak freely and openly with others who know what the unique experience of living with an inhibitor is really like.

SPANISH TRACK | PISTA ESPAÑOL

THURSDAY, MARCH 31Note: This is a closed session for Spanish-speaking families only. Track sponsored by Octapharma and Option Care.

Gusto en conocerte: Bienvenida y Orientación Lunch* | Grand Ballroom A12:30 p.m.—2:00 p.m.Presentador: Felix Garcia

Acompáñenos en ésta plática donde se ofrecerá información acerca de los programas educativos y de asistencia de HFA. En ésta sesión también podrá aprender más detalles acerca de las pláticas y sesiones del Symposium 2016. ¡Todos son bi-envenidos! Venga a conocer otros miembros de la comunidad de trastornos de la sangre y a aprender cómo mantener esas relaciones después de la conferencia. ¡No se pierda ésta ses-ión educativa e importante!

*A meal is provided no cost to attendees.

Glad to Know You: Welcome & Orientation | Grand Ballroom A

Everyone is welcome for a glimpse into the HFA Annual Symposium. The session offers an overview of HFA, its pro-grams and services, as well as a glimpse at the 2016 sympo-sium line up. Meet fellow community members and learn how you can get involved and stay connected with fellow Dads, Moms, Blood Brothers, Blood Sisters, and Partners & Spouses throughout the year. Also, join us to hear more about the Sym-posium sessions you just won’t want to miss!



HFA Perspectiva General/Recursos/ Campamentos de Verano | Grand Ballroom A2:00 p.m.—3:30 p.m.Presentador: Jose Tavarez; Martha Boria, BA

Esta sesion introducirá a los participantes a programs y servi-cios the de HFA; así como también a los recursos disponibles en la comunidad. Esta sesion también motivará a los partici-pantes a aprender sobre las necesidades e intereses del grupo.

HFA Overview, Resources, & Summer Camps

This session will introduce participants to HFA’s Programs and Services as well as resources to the local community. The session also encourages discussion to learn the group’s needs and interests.

Cuidándose a Uno Mismo | Grand Ballroom A3:30 p.m.—5:00 p.m.Presentador: Dave Robinson, PhD, LMFT

Como deben de evitar el estrés las personas que cuidan a otros – Esta sesion introducirá el tema del estrés en las per-sonas que cuidan a otros y enseñará varios mecanismos para aliviar el estrés, no solo para los que cuidan a otras personas sino también para toda la familia.

Taking Care of YOU: Caretaker Stress Relief

This session will introduce the impact of stress on the care-taker(s) and introduce various stress-coping mechanisms not only for caretakers, but for the entire family!

EXECUTIVE DIRECTOR TRACK

THURSDAY, MARCH 31Federal Session: Overview of Executive Agencies | Grand Ballroom B1:00 p.m.—3:00 p.m.Panelists: James Romano; Katie Verb, JD; Vanessa Byams, MPH; Moderator: Deema Tarazi

The session will start with a detailed review of which federal agencies play a role in executing bleeding disorders policy, a discussion with federal policy experts about current feder-al legislation, followed by a panel discussion with represen-tatives from the Centers for Disease Control and Prevention (CDC), the U.S. Health Resources & Services Administration (HRSA), and Patient Services Incorporated (PSI).

Break3:00 p.m.—3:15 p.m.

Current State of the States | Grand Ballroom B3:00 p.m.—5:00 p.m.

Presenters: Adam Alver; Bill Speirs; Katie Verb, JD; Randi Clites; Stephanie Simpson; Stephen Fitzmaurice, MPS

The session will begin with a rundown of what HFA is finding with Project CALLS, followed by a discussion of state legis-lation that affects the bleeding disorders community, a pre-sentation on advocacy and social media, and a panel of state advocacy experts answering your questions.

FRIDAY, APRIL 1Health and Wellness at the Local Level | Marbella8:30 a.m.—9:30 a.m. Presenter: Michael Zolotnitsky, PT

Healthy Bodies Bleed Less! Let us help you reinforce this mes-sage at the local level. This session will start with an interac-tive activity that member organization staff can use at the lo-cal level. Following the activity, participants will discuss ways to implement health and wellness into their work.


Each year, HFA recognizes the service of several special individuals who have gone above and beyond to serve the bleeding disorders community. This year’s awardees will be recognized during our luncheon on Friday, April 1, 11:45 a.m.—1:30 p.m. in

the Grand Ballroom C-E. Awards given will include:

2016 Annual Community Awards

Ron Niederman Humanitarian Award

Ron Niederman, a legal advisor, had hemophilia and HIV and was an active member of the Hemophilia Association of New Jersey. Ron was always willing to provide assistance to those in need, especially during the community’s legal ac-tions during the 1990s. This award is given to an individual for extraordinary service to the national community through unwavering professional service.

President’s Award

(Determined by the current HFA President)

Award selected by the current HFA Board President for exem-plary contributions to the national bleeding disorders com-munity.

Volunteer of the Year

Award selected by the HFA staff team in recognition of tre-mendous national HFA spirit and remarkable volunteerism in the bleeding disorders community.

Charles Stanley Hamilton Legacy Award

Named in remembrance of a brilliant young man who had se-vere hemophilia and passed much too soon. Charles was the son of two individuals who dedicated their lives to serving those with hemophilia, the late Dr. Charles “Chuck” Hamilton, and Jan Hamilton, one of the founders of HFA and long-time Executive Director. This award is given to an individual for extraordinary lifetime service that encompasses national vol-unteerism, professionalism, and leadership.

Michael Davon Community Service Award

Michael Davon was a visionary and a community member. He had hemophilia and contracted HIV from contaminated clotting factor. Michael and his mother Margaret supported organizations that helped his blood brothers and others. HFA was the beneficiary of his compassionate generosity and fi-nancial support in the early years of the organization. This award is given to an individual for extraordinary service to the community through national volunteerism and personal philanthropy.

How It Works: Program Planning at the Local Level | Marbella9:30 a.m.—11:30 a.m. Presenters: Christie VanHorne, MEd, MPH; Kelly Waters, LCSW

This session will offer a review of the cornerstones of solid program planning. From program design to speaker recruit-ment and evaluation tips, we will help you plan that perfect event for your community and clue you in on HFA resources that can benefit your local group.

SATURDAY, APRIL 2 Board Development | Leon1:30 p.m.—3:30 p.m.Presenter: Christie VanHorne, MEd, MPH

What does your ideal board look like? Join us to discuss re-cruitment, board roles, meeting tips and creative ideas to use for board engagement and productivity.

Fundraising Development | Leon3:30 p.m.—5:30 p.m.

Presenters: Sharon Meyers, CFRE; Ann LeWalk, LLPC

This session will share the building blocks of developing an ideal fundraising environment. Learn how to tell your story effectively, create a funding roadmap, break through personal barriers, and manage stress.



Be sure to stop by our FitFactor Well-ness Lounge for a chance to learn about

healthy activities from our guests who are experts in the fields of yoga, Zumba, physical therapy, and martial arts. Have your questions answered by the experts and then participate in a demonstration of their specific field. Afterward, treat yourself to a relaxing, free, 10-minute chair massage. Our resident FitFac-tor guru, Janet Chupka, will also be on hand to answer questions.

The FitFactor Wellness Lounge is located in the Marquis Ballroom.

Thursday, March 315:30 p.m.—7:30 p.m.• 10-min Chair Massage – Spa Aquae• Yoga Demonstration – Corey Pierce• FitFactor Health and Wellness Info

– Janet Chupka

Friday, April 19:00 a.m.—10:30 a.m.• 10-min Chair Massage – Spa Aquae• Exercises with a Resistance Band

Demonstration – Michael Zolotnitsky • FitFactor Info – Janet Chupka

4:00 p.m.—6:00 p.m.• 10-min Chair Massage – Spa Aquae• Martial Arts Demonstration – Michael Pezzillo• FitFactor Health and Wellness Info – Janet Chupka

Saturday, April 212:00 p.m.—1:30 p.m.• 10-min Chair Massage – Spa Aquae• Zumba Demonstration – Wanda McLendon• FitFactor Health and Wellness Info – Janet Chupka

Wellness Lounge Schedule of Activities

About Our Sessions and InstructorsMartial Arts Instructor

Michael Pezzillo is the Chief Instructor for Rhode Island’s Mastery Martial Arts. Having trained in the martial arts for nearly two decades, Michael is thrilled to bring the arts to the bleeding disorders community. Michael has seen firsthand how martial arts builds confidence in students of all ages, races, and physical abil-ity. Michael’s two brothers, Rich and Anthony, are both affected by Hemophilia.

Michael is available to answer your questions about martial arts and provide a brief demonstration on Friday evening in the Wellness Lounge.

Yoga InstructorCorey Pierce is a registered yoga instructor who has long been involved with the bleeding disorders community. He has worked both in small group settings and at summer camp teaching yoga to parents as well as patients of all ages. Corey has seen the benefits of yoga for himself, as he first explored it when recovering from an ankle fusion.

Not only is Corey available to answer your questions and offer a demonstration, but he will be leading yoga sessions on Friday and Saturday mornings at 7:45 a.m. and new this year, a moonlight yoga session at 8:30 p.m. in the Spa Motion Studio. Please join Corey for any or all of these sessions!

Zumba InstructorMitchellville, Maryland resident Wanda McLendon, has been a licensed Zumba® Fitness Instructor with the Zumba Fitness, LLC organization for the past 3½ years, as well as a full-time employee with the federal government. Wanda received li-censes in Zumba Basic and Basic 2, Zumba Toning and Zumba Gold. Along with being an instructor, she’s involved with the Hemophilia Foundation (HFM) of Maryland because her son, Ryan, has Hemophilia B (Factor IX deficiency). Come

join Wanda for Zumba sessions on Thursday from 4-5 p.m., and at both Rise and Shine sessions Friday and Saturday from 7:45 – 8:45 a.m.

Physical TherapistMichael Zolotnitsky, PT, DPT, works as an Orthopedic Physical Therapist in Old Bridge, NJ specializing in post-surgical patients, young athletes and older adults, post-concussion syndrome, and patients with neurological disorders such as MS and Parkinson’s. In addition, he has a strong interest in helping individuals in the bleeding disorder community. He was diagnosed with severe Hemophilia A as a child; however, he has not let this come in the way of being physically active. His

long term goal is to conduct research regarding safe exercises in patients with bleeding disorders to encourage everyone to stay physically active in order to prevent bleeds and live a healthy lifestyle.

Join Michael for the aquatic exercise sessions offered for men only on Thursday afternoon and women only on Saturday morning in the Spa pool!

Chair MassageTake a break and stop by our FitFactor Wellness Lounge for a relaxing massage from the JW Marriott Las Vegas Resort and Spa’s own Spa Aquae! Licensed

massage therapists will be offering 10 minute chair massages on a first-come, first-served basis. These sessions are sure to be in high demand, so come early! (Ages 18 and over only, please)

FitFactorJanet Chupka, RN, BSN has been leading HFA’s health and wellness initiatives since 2011. Janet knows that healthier bodies bleed less, and has been living this mantra for years. Janet is responsible for all of the great stories that you read, as well as all of the wonderful recipes and activity ideas that we share online and in Dateline Federation!

Stop by to talk with Janet about our FitFactor program and discover some of the great new projects and plans that we have to offer this year!

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VOLUNTEERS | BOARD | STAFF

HFA VolunteersTo the approximately 200 regular volunteers, activists, and advocates that work with us through the year, we honor and appreciate you!

HFA Board of Directors & Member OrganizationsHFA is proud to recognize its 48 board seats, representing 44 different local Member Organizations for the bleeding dis-orders community. This board is purposely designed to ensure that each Member Organization has a voice at the national table.

EXECUTIVE BOARD*

Tracy Cleghorn | Board President

Scott Boling | 1st Vice President

Mark Antell | 2nd Vice President

Mandy McCullough | Secretary

Aaron Reeves | Treasurer, Hemophilia Foundation of Minnesota/Dakotas

Josh Hemann | Member at Large, Hemophilia of Iowa

Michael Birmingham | Member at Large, Bleeding Disorder Foundation of Washington

Matthew Compton | Past President

BOARD MEMBERS* Alaska Hemophilia Association . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .John PalmatierBleeding Disorders Association of Northeastern New York . . . . . . . . . . .David HuskieBleeding Disorders Association of the Southern Tier . . . . . . . . . . . . . . . . .Lesa KaercherCentral California Hemophilia Foundation . . . . . . . . . . . . . . . . . . . . . . . . . . .Sean HubbertComprehensive Bleeding Disorders Center (CBDC) . . . . . . . . . . . . . . . . . .John RedingtonConnecticut Hemophilia Society . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Stacie HebertFlorida Hemophilia Association . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Maria RubinGateway Hemophilia Association . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Anne ParrottHemophilia Alliance of Maine (HAM) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Vicki Jacobs-PrattHemophilia Association of the Capital Area . . . . . . . . . . . . . . . . . . . . . . . . . .Dana BrayshawHemophilia Center of Western New York . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Stephen GrazianoHemophilia Foundation of Arkansas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Robin ParkerBleeding Disorders Alliance Illinois . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Adam HiiHemophilia Foundation of Maryland . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Carletha GatesHemophilia Foundation of Michigan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Patrice ThomasHemophilia Foundation of Northern California . . . . . . . . . . . . . . . . . . . . . . .Ashley GregoryHemophilia Foundation of Oregon . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Stewart WorthingtonHemophilia Foundation of Southern California . . . . . . . . . . . . . . . . . . . . . . .Mickey PriceHemophilia of Indiana . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Scott EhnesHemophilia Association of New Jersey . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Joe MarkowitzHemophilia of North Carolina . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Gillian SchultzHemophilia of South Carolina . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Bonnie Phifer


Hemophilia Outreach of El Paso . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Yolanda OrtizLone Star Hemophilia Chapter . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .James SetliffLouisiana Hemophilia Foundation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Edgar GuedryMary Gooley Hemophilia Center . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Lindsey HooperNew York City Hemophilia Chapter . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Melissa PennNorthern Ohio Hemophilia Foundation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Ray VolneyOklahoma Hemophilia Foundation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .John ReedRocky Mountain Hemophilia and Bleeding Disorders Association . . .Heather Nelson Sangre de Oro Hemophilia Foundation of New Mexico . . . . . . . . . . . . . . .Sophia MinhasTennessee Hemophilia and Bleeding Disorders Foundation . . . . . . . . . .Suzie HarlanTexas Central Hemophilia Association . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Open SeatVirginia Hemophilia Foundation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Zack BordoneWisconsin Bleeding Disorders Network . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Darcy ZwierHemophilia Association of New York, Inc. . . . . . . . . . . . . . . . . . . . . . . . . . . . .Linda MugfordNew England Hemophilia Association . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Diane LimaMid-South Hemophilia & Bleeding Disorders . . . . . . . . . . . . . . . . . . . . . . . . .Nicole GatesArizona Hemophilia Association . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Open SeatEastern Pennsylvania Chapter . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Open SeatSnake River Hemophilia & Bleeding Disorders . . . . . . . . . . . . . . . . . . . . . . .Open Seat

*Does not reflect changes in board after March 1, 2016

HFA Staff & ConsultantsKimberly Haugstad, MBA | Executive Director

Pat Brown, CMP | Director of Meetings

Ann LeWalk, LLPC | Development Director

Sharon Meyers, MS, CFRE | Development Director

Matt Landseadel | Director of Technology

Athenna Harrison | Office Manager

Shawn Sullivan | Project Coordinator

Richard Pezzillo | Communications Director

Kyle McKendall | Marketing Manager

Stephen Fitzmaurice, MPS | Communications Coordinator

Wendy Owens, MA | Research Director, PI

Elaine Chan, MSW, MPH | Programs Coordinator, Analyst

Katie Verb, JD | Policy Director

Angela Burton, MSW | Program Coordinator

Adam Alver | Policy Analyst

Michelle Burg | Senior Programs Director

Lauren Neybert, MSW | Programs Director

Sonji Wilkes | Programs Manager

Janet Chupka, RN | Programs Manager

Janel Johnson-Momanyi, MPA | Programs Manager

WE’VE GONE GREEN! Thank you to all our speakers who worked

hard to provide you with the tools necessary to become stronger advocates.

A list of all our speakers and their biographies can be found on the FREE HFA Symposium app

or by requesting a paper copy at the registration booth.

CONSULTANTS

Christie VanHorne, MEd, MPH | Instructional Designer

Deema Tarazi | Policy Analyst

Meredith Clark | Gears for Good Coordinator

Chuck Zellermayer | Accountant

Kristin Mitchell Design | Graphic Designer

Michael DeGrandpre | Graphic Designer

Chad Stevens | Independent Contractor

Kit Salisbury | Independent Contractor

Gina Sierra | Photographer

Wes Culwell | Videographer


Our enduring commitment, brighter than ever. For more than 60 years, we’ve consistently pursued advancements in the treatment of bleeding conditions.

Victor Patient, Baltimore, MD

Follow us on #bleedingconditionscommunity

Baxalta is a trademark of Baxalta Incorporated. Baxter is a registered trademark of Baxter International Inc. All other product brands, trademarks, or logos appearing herein are the property of their respective owners. USBS/MG1/15-0389d

Baxter’s history is rich with medical firsts and pioneering change. And one very exciting change is the separation of BioScience from Baxter International Inc. to become an independent company named Baxalta Incorporated. Although our name changed, our commitment to our heritage of innovation, research and devlopment, and making a meaningful difference to others will continue.

CommunityCommitmentAd_Victor_V2.indd 1 2/11/16 10:11 AM

KOVUS-60135D_M4_UB_BAS_Ad.indd2-19-2016 1:26 PM Deja Londono / Patricia Lopez

Client CodeClient

LiveOverall TrimBleed

# of Colors

PP-775-US-0080Bayer KOVUS

8” x 10.5”8.5” x 11”None

4C

Colors Cyan, Magenta, Yellow, Black

FontsArial MT Std (Bold, Regular, Light), Myriad Pro (Black SemiExtended)

Job info Fonts & ColorsImages

Saved at

None

from hsdlondono5571 by

Printed At

60135_Family_UB_BAS_HR.tif (CMYK; 1578 ppi; 19%), Bayer_Ac-cessSolutions_Primary_Logo_4C.ai (82.27%), Bayer_Icon_4C.ai (68.99%), 60135_KOV_Phone_Icon.ai (50.52%)

Notes Bayer Access Solutions Ad (patient)

CALL

1-800-288-83748:00 am-8:00 pm (ET) Monday-Friday. Spanish-speaking Case Specialists are also available.

Don’t let insurance or financial challenges get between you and your treatment

* The Free Trial Program is available to newly diagnosed patients and patients who are currently using other therapy. Participation in the Free Trial Program is limited to 1 time only. This program is complimentary and is not an obligation to purchase or use a Bayer product in the future. Reselling or billing any third party for the free product is prohibited by law.

† The Free Trial Program includes up to 6 free doses to a maximum of 5,000 IU for new patients and 40,000 IU for previously treated patients. ‡ The program does not guarantee that patients will be successful in obtaining reimbursement. Support medication provided through Bayer’s assistance programs is complimentary and is not contingent on future product purchases. Reselling or billing any third party for free product provided by Bayer’s patient assistance programs is prohibited by law. Bayer reserves the right to determine eligibility, monitor participation, determine equitable distribution of product, and modify or discontinue the program at any time.

§ People with private, commercial health insurance may receive co-pay or co-insurance assistance based on eligibility requirements. The program is on a first-come, first-served basis. Financial support is available for up to 12 months. Eligible patients can re-enroll for additional 12-month courses. The program is not for patients receiving prescription reimbursement under any federal-, state-, or government-funded insurance programs, or where prohibited by law. All people who meet these criteria are encouraged to apply. Bayer reserves the right to discontinue the program at any time.

Bayer and the Bayer Cross are registered trademarks of Bayer.© 2016 Bayer. All rights reserved.Printed in USA 03/16 PP-775-US-0080

Free Trial Program* • Enroll today for up to 6 free doses†

• Delivered to your home free of charge

Access to Therapy

We might be able to provide treatment at no cost if you‡: • Experience challenges getting insurance coverage • Are uninsured or underinsured • Are between jobs and are experiencing a gap in insurance coverage

$0 Co-pay Program§

If you have private insurance, you may be eligible for the $0 Co-pay Program. • You may be able to receive up to $12,000 in assistance per year, regardless of income • Assistance is awarded per patient. Multiple members of the same household can apply • Enrollment can be completed in one short phone call

Live Helpline Support • Consult with an expert in insurance • Spanish-speaking Case Specialists are also available

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MAKE

COUNTe ery day

Learn about Biogen and the treatments we offer. Connect with people in the community. Enjoy family-friendly activities, tasty snacks and more. Come participate in the Biogen Chapter

Challenge to earn points and give your chapter a chance to win up to $5,000.

VISIT THE Biogen Booth. LEARN AND CONNECT WITH THE COMMUNITY.

©2016 Biogen. All rights reserved. HEM-US-0861 03/16

Bring this voucher to the Biogen booth.EARN A Free Point IN THE BIOGEN CHAPTER CHALLENGE.

CHAPTER NAME: STATE:

Let’s Get Social Facebook.com/BiogenHemophiliaCoRes @BiogenHemCoRes

GET READYTO

EXPLOREHere at Genentech, we’re currently

researching a potential new way to treat hemophilia.

We’re excited to share with you what’s happening and are looking forward to meeting you here at HFA Symposium 2016.

Come chat with us at booth 42

Register for future communications at GenentechHemophilia.com

©2016 Genentech USA, Inc. All rights reserved. GPT/011516/0020

GENEMI160023 Rv3 HFA SymposiumAd.indd 1 3/15/16 1:25 PM


Learn more at www.Kedrion.us

©2016 Kedrion Biopharma Inc. All Rights Reserved. February 2016 CO-0286-00-2016

Kedrion is an international

biopharmaceutical company with

corporate headquarters in Tuscany,

Italy. It specializes in the production

of plasma-derived therapies for rare

diseases and conditions such as

hemophilia and immune deficiencies.

Kedrion’s US headquarters are in

Fort Lee, New Jersey and it has

a market presence in more than

100 countries.

KEEP LIFE FLOWING

GET READYTO

EXPLOREHere at Genentech, we’re currently

researching a potential new way to treat hemophilia.

We’re excited to share with you what’s happening and are looking forward to meeting you here at HFA Symposium 2016.

Come chat with us at booth 42

Register for future communications at GenentechHemophilia.com

©2016 Genentech USA, Inc. All rights reserved. GPT/011516/0020

GENEMI160023 Rv3 HFA SymposiumAd.indd 1 3/15/16 1:25 PM


Design&Shine!WELCOME TO HFA 2016

Connect with us! A sneak peak at the fun and activities waiting for you

Exhibit hall opens Thursday, March 31, 5:30 PM–7:30 PM

We can’t wait to see you!

1 Meet the new patient ambassadors

2 Enter the raffle for a chance to win a popcorn machine at the HFA Final Night Event

3 Check out our prize wheel

4 Get answers, support, and educational materials from our staff

5 And don’t forget about the HFA Final Night Event sponsored by Novo Nordisk!

Novo Nordisk Inc., 800 Scudders Mill Road, Plainsboro, New Jersey 08536 U.S.A.

Novo Nordisk is a registered trademark of Novo Nordisk A/S.© 2016 Novo Nordisk Printed in the U.S.A. USA16HDM00339 March 2016

S:7.5”S:9.92”

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NOSV15CDPR3757_HFA2016_Program_Ad_r9_PP.indd 1 3/16/16 10:04 AM

W

e are Innovators

...

We are Resilient..

.

We are Unique.PLEASE JOIN US FOR AN EDUCATIONAL BREAKFAST

OCTAPHARMA IS PROUD TO SUPPORT THE BLEEDING DISORDERS COMMUNITY

AND THE HFA SYMPOSIUM 2016

©2016. Octapharma USA Inc. All rights reserved.Date of preparation: 2/2016. COAG-008-CAD-A

Sunday, April 3, 2016

Valencia Ballroom

JW Marriot Las Vegas Resort & Spa

7:00 AM – 9:00 AM

Visit us at Booth #13

PP-HEM-USA-0280-01 © 2015 Pfizer Inc. All rights reserved. November 2015

8.5"x11

Scan the QR code or visit PfizerFactorSavingsCard.com to download your card today.*

Get your card online now…

Beginning in 2016 (follow these steps):1. Get your prescription for a Pfizer factor product from your doctor.

2. Visit PfizerFactorSavingsCard.com and fill out a brief registration form.†

3. Save and print your card right from your computer. The card is now activated.

4. Keep your card and use it for every purchase until the maximum benefit has been reached or the card has expired, whichever comes first.

This card will be accepted only at participating pharmacies. This card is not health insurance. No membership fees. You will receive a total benefit of $12,000 per calendar year, or the amount of your co-pay over one year, less a patient financial responsibility of $10 per month, whichever is less.

If you have any questions about the use of the Pfizer Factor Savings Card, please call 1-888-240-9040 or send questions to: Pfizer Factor Savings Program, 6501 Weston Parkway, Suite 370, Cary, NC 27513. The Pfizer Factor Savings Card cannot be combined with other offers and is limited to one per person.

*Terms and conditions apply; visit PfizerFactorSavingsCard.com for complete terms and conditions. For commercially insured only. Medicare/Medicaid beneficiaries are not eligible.†You can also request a card from your doctor, or by calling 1-855-PFZ-HEMO.

Eligible patients can save up to $12,000 annually on co-pay, deductible, and coinsurance costs with the Pfizer Factor Savings Card.

Save up to $12,000 in 2016!

#HFA2016 | Symposium 2016 37 PP-HEM-USA-0280-01 © 2015 Pfizer Inc. All rights reserved. November 2015

8.5"x11

Scan the QR code or visit PfizerFactorSavingsCard.com to download your card today.*

Get your card online now…

Beginning in 2016 (follow these steps):1. Get your prescription for a Pfizer factor product from your doctor.

2. Visit PfizerFactorSavingsCard.com and fill out a brief registration form.†

3. Save and print your card right from your computer. The card is now activated.

4. Keep your card and use it for every purchase until the maximum benefit has been reached or the card has expired, whichever comes first.

This card will be accepted only at participating pharmacies. This card is not health insurance. No membership fees. You will receive a total benefit of $12,000 per calendar year, or the amount of your co-pay over one year, less a patient financial responsibility of $10 per month, whichever is less.

If you have any questions about the use of the Pfizer Factor Savings Card, please call 1-888-240-9040 or send questions to: Pfizer Factor Savings Program, 6501 Weston Parkway, Suite 370, Cary, NC 27513. The Pfizer Factor Savings Card cannot be combined with other offers and is limited to one per person.

*Terms and conditions apply; visit PfizerFactorSavingsCard.com for complete terms and conditions. For commercially insured only. Medicare/Medicaid beneficiaries are not eligible.†You can also request a card from your doctor, or by calling 1-855-PFZ-HEMO.

Eligible patients can save up to $12,000 annually on co-pay, deductible, and coinsurance costs with the Pfizer Factor Savings Card.

Save up to $12,000 in 2016! MORE THAN75 YEARSOF IMPROVINGTHE HEALTH& WELL-BEINGOF PEOPLEWORLDWIDE

At Grifols, we are proud of ourpioneering spirit and history ofinnovation. In 1940, we foundeda company that has helpedtransform hematology.

Today, we are a global leaderproviding life-saving proteintherapies, diagnostic solutions,and other tools that hospitals,pharmacies, and healthcareprofessionals need to deliverexpert medical care.

Learn more about Grifols atwww.grifols.com US

/CO/

0116

/004

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Coagulation Factor IX (Recombinant), Albumin Fusion Protein

INTRODUCING IDELVION

Learn more at www.IDELVION.com

NOW APPROVED!

A century of experience…a future of discovery

Continuing the legacy of Emil von Behring, recipient of the first Nobel Prize in medicine, CSL Behring specializes in developing biotherapeutics

for serious and rare conditions, including hemophilia A.

AT CSL BEHRING, WE’RE WORKING TO UNVEIL INNOVATIVE SOLUTIONS

IN HEMOPHILIA A

Important Safety Information

IDELVION is indicated in children and adults with hemophilia B (congenital Factor IX deficiency) for:

• On-demand control and prevention of bleeding episodes• Perioperative management of bleeding• Routine prophylaxis to prevent or reduce the frequency of bleeding episodesIDELVION is not indicated for induction of immune tolerance in patients with hemophilia B.IDELVION is contraindicated in patients who have had life-threatening hypersensitivity to the product or its components, including hamster proteins.IDELVION is for intravenous use only. IDELVION can be self-administered or administered by a caregiver with training and approval from a healthcare provider or hemophilia treatment center. Higher dose per kilogram body weight or more frequent dosing may be needed for pediatric patients.Hypersensitivity reactions, including anaphylaxis, are possible. Advise patients who self-administer to immediately report symptoms of hypersensitivity, including angioedema, chest tightness, hypotension, generalized urticaria, wheezing, and dyspnea. If symptoms occur, discontinue IDELVION and administer appropriate treatment.Development of neutralizing antibodies (inhibitors) to IDELVION may occur. If expected Factor IX activity plasma levels are not attained or bleeding is not controlled with appropriate dose, perform an assay to measure Factor IX inhibitor concentration. Factor IX activity assay results may vary with the type of activated partial thromboplastin time reagent used.Thromboembolism (eg, pulmonary embolism, venous thrombosis, and arterial thrombosis) can occur when using Factor IX-containing products. In addition, nephrotic syndrome has been reported following immune tolerance induction in hemophilia B patients with Factor IX inhibitors and allergic reactions to Factor IX.The most common adverse reaction (incidence ≥1%) reported in clinical trials was headache.

Please see full prescribing information for IDELVION available at this exhibit.

Biotherapies for Life® is a registered trademark of CSL Behring LLC.©2015 CSL Behring LLC 1020 First Avenue, PO Box 61501 King of Prussia, PA 19406-0901 USA www.CSLBehring-us.com COA16-02-0010 12/2015

IDELVION is manufactured by CSL Behring AG and distributed by CSL Behring LLC. IDELVION® is a registered trademark of CSL Behring LLC.Biotherapies for Life® is a registered trademark of CSL Behring LLC.©2016 CSL Behring LLC 1020 First Avenue, PO Box 61501 King of Prussia, PA 19406-0901 USA www.CSLBehring-us.com www.IDELVION.com IDL16-02-0024 02/2016

SEE YOU NEXT YEAR!

FOR JOINING US!


NOTES:

Learn the location at the Awards Luncheon on Friday, April 1, 11:45 a.m.—1:30 p.m.

in Grand Ballroom C-E.

Documents

SYMPOSIUM 2016 LAS VEGAS · 2018. 2. 16. · Welcome and thank you for attending Symposium 2016! Attendance has grown significantly in the past few years and once again, we are thrilled