Rare Disease Report

Advocacy Spotlight: World Federation of Hemophilia

MAY 27, 2016
The World Federation of Hemophilia (WFH) is a global leader improving the lives of people with inherited bleeding disorders. By training experts, advocating for safe treatment products for all patients, and educating people with bleeding disorders, the WFH hopes to make proper  diagnosis and treatment available to all people with inherited bleeding disorders worldwide.

About inherited bleeding disorders

In inherited bleeding disorders, the blood does not clot as it should. Proteins called clotting factors help the blood clot in response to injury, preventing excess bleeding. Components of blood called platelets also participate in this process. Inherited genetic defects in either clotting factors or the platelets can cause easy bruising and spontaneous bleeding into the joints, muscles, or other parts of the body. Severity of these conditions varies widely.
Hemophilia is a type of clotting factor deficiency in clotting factors VIII or IX that affects roughly 1 in 10,000 people. Other kinds of clotting factor deficiencies are even less common.
Prophylaxis is a key part of treatment for these disorders. With regular infusions of the needed clotting factors or platelets, patients are much less prone to excess bleeding.

About the WFH

The WFH is an international non profit organization that has advocated for patients with inherited bleeding disorders since 1963. Patient organizations in 127 different countries participate in the global network.
Though effective treatments are available for most inherited bleeding disorders, the vast majority of people living in developing countries still do not have access to proper care. To help address this need, the WFH initiated its Close the Gap Campaign in 2013 in honor of the organization’s 50th anniversary. The multi-year campaign raised $5.4 million, with $3.5 million from corporate partners and $1.9 million from community fundraising.
The WFH is putting these funds to good use through its many initiatives. Through its Global Alliance for Progress in hemophilia development project, first launched in 2003, the WFH has aimed to close the gap in treatment between developed and developing countries. This has greatly increased the diagnosis and treatment of people with bleeding disorders in 20 targeted developing countries.
In 2013, the WFH added an additional new 20 target countries. To date the program has registered over 35,000 patients, trained over 42,000 people, established 20 national care programs, and distributed over 3.9 billion IUs of blood products.
The WFH works with specific countries and national advocacy organizations to develop national hemophilia treatment programs. Through its comprehensive plan for development, the WFH can provide targeted interventions in specific locations. WFH works to involve local governments, establish quality treatment programs with accurate diagnosis and adequate supplies, strengthen advocacy groups, and promote local research. Through its Twinning program, the WFH also strengthens care by partnering hemophilia organization in developed countries to those in developing nations.
Through the Cornerstone Program, the WFH seeks to serve bleeding disorder patients in the world’s most severely underserved regions. These countries do not have enough developed infrastructure to benefit from the WFH’s other programs. Nigeria, Ethiopia, and Nepal were the first countries targeted. Through the program, the WFH will work to improve diagnosis, provide basic training in management of these disorders, and strengthen local patient organizations.
These are only some of the WFH’s many initiatives. Through its Humanitarian Aid Program, the WFH directly donates blood products to the areas of the world where it is most needed. The WFH also provides training for health professionals as well as a variety of conferences and workshops for researchers and professionals. Additionally, the organization supports epidemiological research and clinical research into inherited blood disorders.
With an estimated 75% of patients with bleeding disorders receiving inadequate care, the WFH still has a long way to go toward its goal of universal treatment for all. But through its ongoing efforts to rally the global community, the WFH works toward a day when this will become a reality.

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