WFH NETWORK

The Forum for Latin America

Over the last few decades, many of the World Federation of Hemophilia (WFH) national member organizations (NMOs) in Latin America have expanded their networks, become more consolidated, and have found creative methods to advocate for the improvement in bleeding disorders care in their countries.

Traditionally, the biggest challenge for people with a bleeding disorder has been to access treatment such as clotting factor concentrates (CFC). However, with increased availability of treatment in many of these countries, the newer obstacle that many face is getting access to sustained care.

All organizations go through similar stages of development – from the initial formation to a more organized patient community. As patients and families become more empowered, then communities increasingly advocate effectively for change and to work together to ensure that the necessary care and treatment becomes available for people with hemophilia and other related bleeding disorders within their country.

IMG_20151120_092703066

The WFH has been actively working in the Americas since its inception; guiding, providing support, and skills training to its NMOs within this region. One of the first regional meeting of many of the Latin American NMOs took place in 2003, in Panama.

In November 2015, the WFH held a Forum for Latin America, in Panama, with the participation of 38 attendees from the 18 Latin American WFH NMOs. This Forum centered around three themes: leadership—what types of leadership styles favor involvement, inclusion, and long-term sustainability; the importance of building alliances as part of the strategy of the organizations to advance on specific goals and objectives; and how to think outside the box in gaining support from government to invest in care. Many of the NMOs shared their experiences and the challenges they face to improving the level of care for people within their country.

The exchanges amongst the organizations during this Forum centered around initiatives that have been effective for their communities, inspiring and challenging each other to think of other possibilities, and learning from each other’s realities. As one of the participants shared, “there are no limits to what can be achieved when there is a good working team, clear objectives and determination”.