Anna Meriluoto, FIN Vice President Europe, was happy to attend the Rare Diseases International annual membership meeting on June 16th on behalf of the FIN board. She was invited to speak at the event about the importance of advocating for rare diseases at the international level and how we have and could use the UN resolution as a tool to increase the recognition of rare diseases going forward (UN resolution = the first ever United Nations resolution on “Addressing the challenges of persons living with a rare disease and their families, 16.12.2021).
Rare Disease International is working hard to strengthen the global impact and implementation of the UN resolution. Reaching the historical resolution was by no means an endpoint but rather a beginning of a long journey. The resolution is an important tool to ensure that rare diseases will be put and will stay on the agenda of any national policy makers. It will also strengthen the global rare disease movement and provide rare diseases with both visibility and recognition. It is also the first step towards preparing for a WHO (World Health Organisation) resolution on rare diseases in 2024.
The meeting ended with an introduction and discussion on how to better ensure global access to both diagnosis and treatment. The early steps include providing an operational global description of rare diseases which might not be as easily achieved as it seems at first. There will also be a need for essential lists for both diagnostics and medicines.
FIN is very proud to be a member of Rare Diseases International. Fabry disease is a very rare disease with relatively small patient numbers so we really need to combine forces and work together with the rare disease community in order to improve the global situation and to either initiate or continue a dialogue with national policy makers in all countries. The international rare disease community consists of 300 million patients worldwide and as we all know, there is always strength in numbers.
