9:00a – 4:00p RARE Entrepreneur Bootcamp (Application Required)

11:30a – 3:30p RARE Global Advocacy Leadership Symposium (Invitation Only)

12:30p – 4:30p Corporate Alliance Meeting (Invitation Only)

4:00p

Welcome Reception

12:00p – 4:00p Rady Children’s Institute for Genomic Medicine’s Genomics 101 Workshop

12:00p – 6:00p Registration Sponsored by:

3:00p – 6:00p

Freshman Orientation

6:00p – 8:00p

Exhibit Pavilion Open Sponsored by:

Sponsored by:

SUMMITOVERVIEW

SEPTEMBER 18, 2019 - PRE-SUMMIT

WED18

SUMMITOVERVIEW

THUR19

DayOne

1:00p–

2:00p

10:30a–

11:30a

3:00p–

4:00p

TRACK 1

Eating Well: Taking Care of Yourself

through Nutrition

Getting Financial Help: Qualifying for Disability and Other Insurance Matters

Romance While Rare

We Are Here: Finding Others and Building

Your Community

Your Diagnosis Matters: What are ICD

and ORPHA Codes and Why are They

Important

Developing Partnerships Among Rare Communities

and Individuals

Early Drug Development: What

Patients Bring

Rare Disease Research: Getting

Your Disease Noticed

General Data Protection Regulation:

Implications for You and Drug Development

Caring for Yourself and Others While

Rare

Building and Activating Your

Community

Patients as Drivers in Drug Development

What’s Now: Innovations inRare Disease

Technologies for Learning about Rare

Disease from Patients and Caregivers

Genome Sequencing: Hope, Promises and

Limitations

What is Druggable?New Therapeutic Targets in Rare

Disease

TRACK 2 TRACK 3 TRACK 4

7:00a – 7:30a Yoga Sponsored by:

7:30a – 4:00p Registration Sponsored by:

7:30a – 8:15a Breakfast Sponsored by:

8:15a – 9:30a Welcome and Keynote with Susannah Cahalan

9:30a – 10:30a Networking/Appointment Break Sponsored by:

9:30a – 10:30a Poster Presentations Sponsored by:

9:30a – 7:30p Exhibit Pavilion Open Sponsored by:

Lunch Sponsored by:

Networking/Appointment Break Sponsored by:

Closing Session: Challenging Your Limits

Day One Reception

4:15p – 5:15p

5:15p – 7:30p Sponsored by:

Poster Presentations Sponsored by:

11:30a–

1:00p

2:00p–

3:00p

2:00p–

3:00p

SEPTEMBER 19, 2019 - DAY ONE

DayTwo

1:00p–

2:00p

10:30a–

11:30a

2:45p–

3:45p

TRACK 1

Family Planning: Decisions and

Considerations

Crafting a Career:

Professional Life with a Rare Disease

Finding Answers: The Importance of

Communicating with Clinicians

We Are Here: Finding Others and Building

Your Community

Leveraging Digital Tools for Reach and

Impact

The New Normal: Patient Communities

Drive Innovation

Patients and Caregivers: Shaping

Clinical Drug Development

Patients and Advocates as

Entrepreneurs: New Models for Drug

Development

The Value of Rare Disease Therapies:

Patient Perspectives Needed

Owning Your Future with aRare Disease

Becoming aStronger Advocate

The Drug Development

Future: Science, Policy, Partnerships

and Economics

What’s Next: Innovations in Rare

Disease

Breakthroughs for Rare Neurological

Syndromes

The Future of Rare Metabolic

Syndromes

Advances in Rare Immunological

Diseases

TRACK 2 TRACK 3 TRACK 4

7:00a – 7:30a Yoga Sponsored by:

7:30a – 12:00p Registration Sponsored by:

7:30a – 8:15a Breakfast Sponsored by:

8:15a – 9:30a Chasing Cures: The Power of Patients

9:30a – 10:30a Networking/Appointment Break Sponsored by:

9:30a – 10:30a Poster Presentations Sponsored by:

9:30a – 4:20p Exhibit Pavilion Open Sponsored by:

SUMMITOVERVIEW

Lunch Sponsored by:

Networking/Appointment Break Sponsored by:

Break

Next: Imagining the Future of Rare Disease

RARE Champion of Hope Celebration Reception

RARE Champion of Hope Celebration

3:45p – 4:00p

4:00p – 5:00p

6:30p – 7:30p

7:30p – 10:00p

Poster Presentations Sponsored by:

Sponsored by:

11:30a–

1:00p

2:00p–

2:45p

2:00p–

2:45p

SEPTEMBER 20, 2019 - DAY TWO

FRI20

SUMMITNETWORKING

Want to network with people who are interested in similar topics? Join one of our many guided networing sessions. Each session has a theme and expert facilitators to help you connect with other attendees around common interest areas.

Topic: Adult Rare Disease StakeholdersDate: Thursday, September 19Time: 9:30 – 10:30 a.m. Location: Nautilus Ballroom 4, Bottom FloorFacilitator: Andra Stratton, President & Co-founder, Lipodystrophy United

Topic: Moms and Dads of Rare Disease PatientsDate: Thursday, September 19Time: 9:30 – 10:30 a.m.Location: Nautilus Ballroom 5, Bottom Floor Facilitator: Jennifer Seidman, Courageous Parents Network

Topic: StorytellingDate: Thursday, September 19Time: 2:00 – 3:00 p.m. Location: Nautilus Ballroom 5, Bottom FloorFacilitators: Travis Flores, Speaker and Author,Madison McLaughlin, Actress

Topic: Genetic Testing 101Date: Friday, September 20Time: 9:30 – 10:30 a.m. Location: Nautilus Ballroom 4, Bottom FloorFacilitators: Jessica Shiles, Genetic Counselor, Fulgent Genetics,Laura Drzich, Curation QA Associate, Fulgent Genetics

Topic: Working with ResearchersDate: Friday, September 20Time: 9:30 – 10:30 a.m.Location: Nautilus Ballroom 5, Bottom Floor Facilitator: Sandra Bedrosian-Sermone, President and Executive Director,ADNP Kids Research Foundation

Topic: TravelDate: Friday, September 20Time: 2:00 – 2:45 p.m.Location: Nautilus Ballroom 5, Bottom Floor Facilitator: Kevan Chandler, Founder, We Carry Kevan