Gaining further insight into the world of rare diseases

This year, the World Federation of Hemophilia (WFH) became a member of Rare Diseases International (RDI), an organization with a mission to be a strong common voice on behalf of people living with a rare disease around the world. By joining RDI, the WFH will now be part of a global alliance that lobbies and advocates for patients and the families of patients with a rare disease.

RDI is part of the United Nations (UN) NGO Committee for Rare Diseases, a body dedicated to bringing together the international NGO community, major UN agencies, national governments, academic and scientific participants, and private sector groups.

In November, I had the honour to represent the WFH at the UN, speaking at the inauguration of the NGO Committee for Rare Diseases. During this gathering, I shared with other NGOs how the WFH works with our national member organizations (NMOs) to address the challenges facing our community.

As a member of RDI, the WFH will now be part of a larger international agenda, giving voice to our 134 NMOs on the global stage. This increased access to international entities such as the UN can only further benefit WFH advocacy initiatives.

Earlier this year, I spoke at the Rare Diseases Conference 2016 in Cape Town, South Africa. It was my privilege to share the many successes and achievements that the WFH has accomplished with that community. Our NMOs are coming up with innovative initiatives to address the challenges of raising awareness about bleeding disorders. The WFH provides the link between all our NMOs to exchange best practice solutions through trainings, meetings, the Global NMO Training, and the WFH World Congress.

However, there are many rare disorders within our community that need further support. There are small patient populations with platelet disorders and factor deficiencies that are considered extremely rare. Through exchanges and experience-sharing with RDI, the WFH will be able to gain further insight into how to best support these groups.

The WFH will be able to learn from other RDI members’ experiences, and we will also share our own expertise and learnings with them. Ultimately, the goal is for us to work together as a team, and for the WHF to continue to advance our vision of Treatment for All.