World Federation of Hemophilia

Hola from Buenos Aires

Laurie Kelley July 12, 2010

I’m in Argentina all week at the World Federation of Hemophilia Congress, where an estimated 4,200 people have congregated to share information about hemophilia and to network. It’s been great to meet old friends (some going back 20 years now!) and to meet new friends. It’s actually mind-boggling how many people are here, all concerned about hemophilia from all corners of the earth.

Two of the first people I bumped into were Lynley and Richard Scott from New Zealand. I feel like I know them well as–you will see soon–they have contributed many stories of son Andrew for my new inhibitor book. We chatted today for about 5 straight hours as we hung out (while the rest of the convention seemed glued to the big screens to watch the World Cup), and then went out to dinner together. Argentina is beef capital of the world and has some of the best beef–but I don’t eat red meat! Well, their flan is great too!
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It was a great pleasure to see one young leader, Masood, from Pakistan, who has truly blossomed to a national position. I met him last in 2007 in Lahore, Pakistan. He has hemophilia, and excellent skills that should help his country move forward in care.

The topics for presentations range from the practical–how to help children cope, physiotherapy and health care delivery–to the possible, including many discussions on longer acting factor and new products.

One thing I learned that has really made me happy: Ghana and Tanzania should be inducted as members of the World Federation of Hemophilia. These are two countries I have been advising for the past 5 years each to help them establish hemophilia societies. At long last, their hard work will be paid off by becoming members. Being an official member means that they will be eligible for many more resources from the community, such as training, factor donations and potentially twinning.

I still have a few more days to go and hope to learn lots more to share. ¡Hasta luego!

World Hemophilia Day, Big and Small

Laurie Kelley April 19, 2010



World Hemophilia Day was celebrated Saturday around the world in many different ways. The best story I’ve heard so far is how the Romanian Hemophilia Society turned a Bucharest city fountain blood red to raise public awareness of the disorder. I heard from my Romanian friend and partner Adriana that the government then pledged to increase funding to hemophilia 70%. That’s a big way to celebrate!

Likewise, many of the pharmaceutical companies make large donations of product or money to the World Federation of Hemophilia, to commemorate this day.

WHD falls on April 17, the birthday of the founder of the WFH, Frank Schnabel. As the WFH is headquartered in Montreal, many assume Frank was Canadian. He was actually a Californian, and moved to Canada to seek better health care coverage. We should keep that in mind on his birthday, especially here in the US where the health care debate rages on.

There are an estimated 300,000 people with hemophilia who get little or no treatment; most reside in developing countries. Some countries, actually a lot, get no factor at all. But we have small victories, and that too is what WHD is all about. 18-year-old Alfonso, from the Dominican Republic, is someone special to me. I’ve known him for over 10 years, since we started our first camp in the DR in 1999. He was shy, sweet and always smiling, no matter the pain. I used to tower over him, and now he towers over me! Last year, I enjoyed watching him mentor the younger boys as a counselor… and he hobbled about on a leg badly mangled by untreated bleeds.

I was so touched by how helpful he was at camp, and how much joy he brings to all, that I told him I’d get him anything: an iPod, new computer? I know he comes from a family with little means.

“I just want to walk normally,” he confided in Spanish.

His dream is coming true. He had surgery this year, with factor IX donated by a company. The hospital absorbed most of the fees (we helped just a little). He emailed me with extreme thanks for making this wish come true, and with many blessings and exclamation marks!

To me, this is what World Hemophilia Day is all about. Helping the world’s people with hemophilia, in big ways and small, concretely and measurably. I hope his life has been changed by this. I can’t wait to see Alfonso at our 11th Annual Camp, June 5, perhaps walking normally!


The World Meets in Istanbul

Laurie Kelley June 1, 2008

I am in historic and amazing Istanbul, Turkey, site of the capital of the once Byzantine Empire and this week site of World Federation of Hemophilia Congress, which brings together people involved with hemophilia from all over the word. It is the largest hemophilia gathering, with over 4,000 in attendance! Mark Skinner, person with hemophilia and former US NHF president, is the WFH president.

Mark gave a wonderful talk tonight at the opening reception, followed by a Turkish symphony, with exotic and rich music, and traditional dancers. Afterward, all 4,000 attended the exhibition hall, where the manufacturers and also the hemophilia national organizations from many countries had booths. This is an all week long event, which gives attendees the chance to hear what other countries are doing in terms of hemophilia treatment, research and best practices. It also is a great chance to network. For me, in the international community for 12 years, it is like a family reunion. Already I have met with representatives from the Dominican Republic, where we just held camp, Pakistan, Russia and India.

Visit the WFH website at www.wfh.org to learn more about their efforts to help educate, organize and bring treatment to people with hemophilia worldwide.

 

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