The World Federation of Hemophilia (WFH) Twinning Program was established more than 15 years ago and since then, many national member organizations (NMOs) have experienced the importance and significance that twinning partnerships can have for people with hemophilia.
Many successes have resulted from these relationships established between two communities which often have contrasting realities.
A few years ago, the Spanish Federation of Hemophilia realized the important role it could play in helping the WFH work towards its vision of Treatment for All. Spain’s relatively recent democracy was preceded by a political, economic, and social situation very similar to the current reality of many countries, especially in Latin America. Cultural and linguistic connections between Spain and these countries is another advantage that increases the chances of successful twinnings, such as the three organizational and two hemophilia treatment centre partnerships that Spain has been involved in since 2003.
The most recent twinning partnership, linking Peru with Galicia, a small region of northwestern Spain, received the 2009 Twin of the Year Award. These organizations decided to twin in 2008, when both had renewed their steering committees. Since then, the Peruvian Association has established its headquarters, with full-time staff; is promoting the creation of a scientific commission; and its national registry is almost a reality in the capital city. In February 2009, a delegation from the Hemophilia Association of Peru (Asociación Peruana de la Hemofilia) and the Hemophilia Association of Galicia (Asociación Galega de la Hemofilia) met with the President of Peru, Alan Garcia, to discuss the challenges caused by bleeding disorders. However, the biggest success of the partnership is that Peru is now part of the WFH’s Global Alliance for Progress (GAP) program. As part of this program, an agreement was signed with the Ministry of Health to ensure better coverage of treatment for people with hemophilia.
The twinning of the Hemophilia Federation of the Republic of Mexico (Federación de Hemofilia de la República Mexicana) and the Spanish Federation of Hemophilia (Federación Española de Hemofilia)focused mainly on strengthening the organizational structure and encouraging active participation of youth in Mexico. Both organizations are federations with similar structures, and both need to work closely with policy makers in every region due to a decentralized healthcare system. However, there is a public health system in Spain, whereas in Mexico, only about 60% of people have some form of social security.
The past year’s twinning objectives were to promote youth leadership, increase awareness of the rights of people with bleeding disorders, and advocate for increased health coverage. Now many young people actively participate in programs and activities in their state associations.
Twinning partnerships bring together two geographically remote organizations, two teams of professionals with different expertise and resources, and many people with a common problem whose healthcare experiences can be very different. Through twinning, organizations are able to learn from each other and help achieve Treatment for All.
The Twinning Program is supported by exclusive funding from Pfizer.