|Arc de Triumphe|
attending the wonderful 50th anniversary of the World Federation of
Hemophilia, taking place during its biannual Congress. The WFH, founded by
American Frank Schnabel, is the premiere hemophilia nonprofit in the world,
dedicated to improving the lives of those with hemophilia around the world,
uniting those with hemophilia globally, and advancing access to care in
developing countries. Today was the opening day, and a staggering,
record-breaking 5,300 are in attendance from 130 countries!
|Laurie Kelley with Dr. Tatiana|
Zoraida Rosado, whom many of my readers know through email; she is director of
Project SHARE, our factor donation program, and also ships out our many books
to patients. This is her first time to Europe and to a WFH meeting. It’s a
great opportunity for her to meet with our many country partners, who work with
us to get factor to patients in developing countries.
meetings since 1996, and attend every two years. It’s a great chance to learn
more about WFH efforts, to meet up with those we serve, and to make new
acquaintances. Right away I bumped into Dr. Tatiana Andreeva, a pediatric
hematologist from St. Petersburg whom I’ve known since 1998. She even visited
my home once!
|(L to R) Jill Smith, RN (Australia), Anne Gillham, RN
(South Africa), Laurie Kelley
RN from Australia—who traveled with me once to Zimbabwe for a week to do an
assessment of hemophilia care there (and shared a tent with me on safari!)—and
incredible Anne Gillham, RN from South Africa, who has been a vital source of
training and support for so many countries in Africa besides her own.
|With Simba (Zimbabwe) and Megan (Nigeria)|
excellent. Mark Skinner, past president of NHF and who has been president of
WFH for 8 years now, gave an insightful talk about the accomplishments of WFH
in helping advance care. But never have I seen the WFH so intensely focused on
developing countries. This made my heart sing, for it’s been my mission and
desire since 1996, that we do not forget those at the bottom of the wait list,
the ones whose government does not provide funding for treatment. A very
touching and powerful movie was shown about how WFH has worked in Senegal to
improve care, and I was pleasantly surprised to see that producer Marilyn Ness
had created it! It was beautiful, so well done. I’ve been to Africa many times
and have traveled those same dusty roads, been in the same hospitals with paint-peeled iron
beds, no AC, suffering patients. Marilyn captured the feel of hemophilia care
in Africa well.
serious push to “Close the Gap” with a new campaign, designed to raise $5
million to help create programs to reach the impoverished countries where care
is lacking. We still have four more days of the Congress, and already the tone
has been set: we must act now to help save the lives of those without treatment.
It’s what we’ve been focusing on at Save One life, my nonprofit, and I applaud
WFH for putting the spotlight on developing countries as it moves forward, and
asking everyone to join in.
moved into the exhibit area and visited the various booths by the
pharmaceutical companies. There we met even more colleagues and friends. I was
thrilled to meet up with my friends from Africa, especially Megan Adediran,
president of the Nigerian Haemophilia Foundation, who just published a new book
about her experiences with hemophilia, called A Light at the End of the Tunnel.
Registration is open next week for Inhibitor Family Camp at Victory Junction
September 28-30! And surprise for factor VII families: Registration is open for
the very first national retreat for those affected by FVII deficiency September
7-9 in New York. Comprehensive Health Education Services, run by patients with bleeding disorders, is
hosting these. They have partnered with
Barb Forss from the LadyBugs Foundation, and both programs are being made
possible from an educational grant from Novo Nordisk Inc.
July 9 Inhibitor
Family Camp registration opens at inhibitorfamilycamp.org
July 13 FVII
retreat registration opens at FVIIretreat@comphealthed.com