CANADIAN HEMOPHILIA SOCIETY— RED WHITE AND YOU DONOR NEWSLETTER

… Ben, 2 years old - At 7:00 a.m. every Monday morninghe receives his infusion shot before being dropped off atday-care. If he doesn’t receive this vital treatment he risksbleeding or even hemorrhaging in his muscles, his joints

and potentially into a vital organ like his brain. Unfortunately, Ben will needinfusions again on Wednesdays and Fridays - three times a week for the restof his childhood.

… Matthew, 6 years old and Alex, 8 years old – at theseyoung ages they have already taken a grown-up responsi-bility for their own care. Both children are infusing them-selves. They have been taught by hemophilia nurses at oneof the CHS Summer Camp programs. Regular infusion willcontinue into their adulthood.

… George is now able to control the bleeds he suffers,but his joints are severely damaged, a victim of a timewhen care and treatment was less advanced. He facespain with every step and, in the future, surgery to fusehis ankles and replace his knee joints.

Ben needsinfusions threetimes a week

George faces painwith every step

to improve the health and quality of life for all people withinherited bleeding disorders and find a cure for people like…

Your donation makes a real difference.

www.hemophilia.ca

RED white &YOU

The CHS is allabout people likeMatthew andAlex–they areour strength.

WHY WE DO WHAT WE DO…

DR. CHRISTINE DEMERS, Centre hospitalier universitaire affilié de Québec, Quebec City, QuebecHaemostatic changes during pregnancy in healthy women and women withinherited bleeding disorders presentingwith menorrhagia

WENDA L. GREER, PhD, Dalhousie University, Halifax, Nova ScotiaThe role of X-inactivation in theexpression of hemophilia A in women

DR. GONZALO HORTELANO,McMaster University, Hamilton, OntarioImplantable microcapsules as genetherapy for hemophilia A

DR. PAULA JAMES,Queen’s University, Kingston, OntarioGenetic differences between obligatecarriers of Type 3 VWD and individualswith Type 1 VWD

JOANN NILSON, PT, Royal University Hospital, Saskatoon,SaskatchewanCreating meaningful messages forindividuals with mild hemophilia throughconsultation: integrating grounded theoryand action research

DR. MAHA AHMED OTHMAN,Queen’s University, Kingston, OntarioEvaluation of thromboelastography (TEG)as a tool in monitoring the effect ofrecombinant factor VIIa in hemophilia Aanimal models

DR. MAN-CHIU POON,University of Calgary, Calgary, AlbertaInvestigation of clotting factor activityheterogeneity in severe hemophilia A

DR. CHRISTINE DEMERS

WENDA L. GREER, PHD

DR. GONZALO HORTELANO

DR. PAULA JAMES

JOANN NILSON, PT

DR. MAHA AHMED OTHMAN

DR. MAN-CHIU POON

moving forward withRESEARCH

making progress in CARE and TREATMENT

• We hosted the symposium HIV and theBlood System: the Canadian Experi-ence which offeredhemophiliacs and otherindividuals living withHIV/AIDS, contractedthrough the use oftainted blood or bloodproducts, opportunitiesto learn about the latestresearch on a variety of related issuesand topics.

• We organized Challenges, Choices,Decisions, a national workshop foradults with an inhibitor who areconsidering joint surgery.

• We hosted an international conferencein collaboration with the Network ofRare Blood Disorder Organizations, entitled Comprehensive Care for RareBlood Disorders.

• The CHS Medical and ScientificAdvisory Committee continues to pro-vide timely advice on emerging issueswith respect to standards of care.

• The Factor First on-linesurvey was completed andthe findings suggestedthat the Factor First Pro-gram has made a real difference in supportingemergency care of personswith bleeding disorders.

• National Standards of Care were created and will be reviewed by theCHS and health care provider groups inMay 2007.

With your help the CHS invested to support research into bleeding disorders.

GUIDELINES FOR EMERGENCY

MANAGEMENT OF HEMOPHILIA

AND VON WILLEBRAND DISEASE

FactorFirst

• We produced Self-Infusion: Confidence, Autonomy,Freedom, a new video featuring young people withbleeding disorders talking to other children aboutthe benefits of self-infusion.

• We hosted Inhibitors and Beyond in April 2006.This workshop provided parents and children theinformation and support to enable them to bettercope with inhibitors.

• We advocated successfully for compensation forall people in Canada excluded from the pre-86,post-90 hepatitis C federal compensation plan.

• We distributed threeissues of our newslet-ter Hemophilia Today.

• We offered Passportto Well-Being work-shops in each provinceincreasing awarenessof the many benefits offitness, home infusion,medical record keep-ing, optionsto manag-ing pain.

• We regularly update our Web site to ensure wecontinue to be one of the top sites for reliable bilingual information. In the past year, we witnessed an 80% increase in visitors from 195countries and our 25 most popular educationaldocuments were downloaded 75,000 times inEnglish and 47,000 times in French.

making a difference through SUPPORT and EDUCATION

Learning the benefits of self-infusion

Your donation makes a real difference.

• We hosted, in collaboration with the WorldFederation of Hemophilia, Hemophilia WorldCongress 2006 in Vancouver, B.C. More than4000 physicians, researchers, allied health careprofessionals and community leaders attendedthe event.

• We continue to be active in twinning part-nerships with developing countries: SouthAfrica, Serbia, Belarus, China, Tunisia,Mongolia, Jordan and Iran.

supporting INTERNATIONALDEVELOPMENT

www.hemophilia.ca

Canadian Hemophilia SocietyServing the Bleeding Disorders Community

Hem philiaTODAY

• Provide training to Hemophilia Treatment Centrehealth care providers with three (3) or less years of experience by organizing the 2 nd New TeamWorkshop.

• Host Rendez-vous Québec, the 2007 CHS Medicaland Scientific Symposium, which will providephysicians, other health care providers and patientswith state-of-the-art information on the care andtreatment of inherited bleeding disorders.

• Organize a Research Summit with key stakeholdergroups to seek advice on future strategic directionsfor the CHS research programs.

• Enhance and develop resources to support theneeds of people with inherited bleeding disordersincluding educational booklets such as All aboutCarriers.

• Advocate for the most stringent blood donorscreening criteria to ensure the safest blood prod-ucts for all Canadians.

• Produce the 4th bi-annual edition of the Report Cardon Canada’s Blood System.

our work continues: PLANS FOR 2007

Your donation makes a real difference.

The Canadian Hemophilia Society strives to improve the health and quality of life for all people with inherited bleeding disorders, and to find a cure.

Contact us: Joyce Gouin at jgouin@hemophilia.caor call our toll-free number 1 800 668-2686. www.hemophilia.ca

• We continued our vigilance as the “watchdog”of the blood system on behalf of all Canadians.

• We continued to participate on CanadianBlood Services and Héma-Québec AdvisoryCommittees to ensure all Canadians have asafe and secure blood supply.

ensuring a SAFE, SECUREBLOOD SUPPLY for allCanadians