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המופיליה מידע כללי

ההיסטוריה של ההמופיליה

הפדרציה העולמית להמופיליה - WFH

מהי הפדרציה העולמית להמופיליה WFH ומתי הוקמה?

President of the WFH

Louise Roy [mailto:lroy@WFH.ORG
Wednesday, January 19, 2005 10:07 PM

An "energizing experience" for the new president of the World Federation of
Hemophilia

"The first months as WFH president have been energizing," says Mark Skinner.
"The extent, reach and complexity of the organization's activities are
immense. Delivering treatment products to emergency patients, lobbying a
health minister to spend more on hemophilia care, training doctors or
advising concerned parents - it's all in a day's work for the WFH."

The 44-year-old attorney from Washington, DC, was elected in October, to
replace Brian O'Mahony who had served as WFH president since 1994.

In his new role, Skinner is pursuing a number of goals: "One of the most
significant challenges is the need to diversify the WFH's funding base and
look outside the pharmaceutical industry for new sources of revenue. I am
using my background to secure more and diverse resources for the
organization."

Skinner has an extensive and life-long involvement with the bleeding
disorders community. A member of the WFH executive committee since 2002,
Skinner was also president of the National Hemophilia Foundation (NHF) in
the USA. He is the inaugural recipient of the NHF's Distinguished Leaders
Award and was selected in 2003 as Humanitarian of the Year.

The new WFH president has a strong background in public policy and advocacy
for improved safety and supply of blood products. He belongs to the WFH
Blood Products Safety, Supply, and Availability Committee, and serves on the
NHF's Medical and Scientific Advisory Council (MASAC). Skinner regularly
consults on a range of public policy issues including the development of
effective and sustainable public policy programs for non-profit
organizations.

Skinner has been a regular presenter on important blood safety, supply and
availability issues. He continues to serve as a member of the NHF blood
safety and gene therapy working groups. Skinner has been an active
fundraiser, including a research campaign that raised $5 million dedicated
to finding a cure for bleeding disorders. He chaired the NHF Advocacy
Committee that guided the Ricky Ray Hemophilia Relief Fund, which provided
compensation for people with hemophilia infected with HIV from tainted
clotting factor.

Growing up in rural Kansas during the 1960s with severe hemophilia A has
made Skinner acutely sensitive to the needs of those with limited access to
treatment. His early life experiences have had a lasting impact. In 1984, he
began his advocacy involvement by helping to enact a state program for those
without affordable treatment.

He takes a global view on this issue: "I am looking for ways to make safer
treatment products more affordable for emerging countries. This will require
innovation and great collaboration with all stakeholders including
governments, regulators and industry."

The new WFH president sees the position as an exciting opportunity and the
culmination of a lifelong passion to help people with hemophilia around the
world: "I am pleased to be at a point in my life where I can give something
back to the community. My passion runs deep. I remember the pain and
frustration of my early life. There is no need for any child to go through
that."

Mark Skinner is available for media interviews.

For further information contact:
Richard Andrews, Communications Officer, World Federation of Hemophilia
Tel: +1 (514) 394-2822
E-mail: randrews@wfh.org

[Photo caption : WFH president, Mark Skinner (right), is congratulated by
his predecessor, Brian O'Mahony]