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Sunday, April 17, 2016

Celebrating World Hemophilia Day

Today is World Hemophilia Day, celebrated by thousands of people with hemophilia around the world. We're a small community: only an estimated 400,000 worldwide. Of this, only 25% are estimated to have adequate treatment. The majority with hemophilia have little to no access to medical care or factor, the blood clotting medicine that stops bleeding.

Today is also the birthday of World Federation of Hemophilia founder Frank Schnabel, an American who moved to Canada to seek better access to treatment and financial coverage for that expensive treatment. It was there he founded the WFH over 50 years ago. Today the WFH represents a staggering 120 countries as members. With membership, these countries receive NGO training, medical help, donations of factor and educational materials.

This week I am traveling to one of WFH's member countries, Uganda. This is my first time there, and I go to invite the country to join our child sponsorship program Save One Life. Save One Life has over 1,200 children and young adults with bleeding disorders enrolled and has over 400 sponsors who provide financial support. Nurse Kate Khair, from the Great Ormond Street Hospital in London, has been to Uganda several times to help diagnose children with hemophilia. She wrote to me about the challenges of working in a country where so many are undiagnosed and live in rural areas:

Pictures from Barbados's first World
Hemophilia Day!
"I met a family of 4 boys who have a small holding about a 5 hour drive from Kampala (the capital). When we were there, mum was 8 months pregnant, the boys all have terrible joints and told us about having to go to the river to get water - imagine that with a big knee bleed. There was one sister; she and the dad were essentially holding the family together. The boys' wish was to be able to go to school, but it was too far to walk. I'm sure this is a familiar story for you, but my 2 team members and I have been profoundly affected by them. Save One Life makes, I know, massive impacts on families like these." 

Indeed it does! I am especially encouraged today by the efforts of a mother of a child with hemophilia in Barbados, Erica Worrell, who has created the first hemophilia society there. Two years ago I traveled to Barbados to try to motivate the patients to start a national patient organization. The interest was there, the needs are great; we met quite a few families and planted some seeds of advocacy. All it took at last was one brave mother to take the first steps. Today, Barbados celebrated World Hemophilia Day for the first time, and has joined our global community. This is what the day is all about, celebrating the efforts of the many who work so hard to bring support and medical help to those in need, while bringing attention to the public about this rare disorder. Together, we can do it, and fulfill a dream Frank Schnabel had so long ago.

http://www.barbadostoday.bb/2016/04/17/barbados-observes-world-haemophilia-day/#comment-96261





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