Great news for the rare disease community: for the first time, the 193 United Nations (UN) Member States adopted a political declaration on universal health coverage (UHC) that includes the mention of Rare Diseases on September 23rd, 2019!
This significant milestone is the result of various advocacy steps taken over the past three years by EURORDIS – Rare Diseases Europe, Rare Diseases International (RDI) and the NGO Committee for Rare Diseases.
Read the Political Declaration of the High-level Meeting on Universal Health Coverage “Universal health coverage: moving together to build a healthier world” where rare diseases are mentioned (point 34) here
Yann Le Cam, Chief Executive Officer of EURORDIS, member of the Council of RDI and member of the Executive Committee of the NGO Committee for Rare Diseases, stated, “This is the most important health-related text in the 15 years of the 2030 Agenda for Sustainable Development. It reinforces and creates a dynamic in almost all countries in the world to increase the percentage of the population (including people with rare diseases) benefitting from health coverage, to enlarge the list of care services covered, and to increase the percentage of healthcare expenses covered by public resources. The declaration gives us the most robust grounds to date to move towards a UN resolution on rare diseases”.
Read the full statement from Eurordis here