For the first time ever, in a UN official political declaration document was stated that persons with rare diseases deserve to be part of the universal health coverage (UHC). The EJP RD is very enthusiastic about this decisive turning point for the entire rare disease community and even more motivated to make a difference in the field working together hand by hand with patient organizations, the scientific community, and the other stakeholders.
A great achievement for the entire Rare Disease community that motivates all of us to do better to improve the quality of life of patients and their families. EURORDIS, Rare Diseases International (RDI) and the NGO Committee for Rare Diseases have released a Joint Statement to celebrate this milestone. Both Yann Le Cam (EURORDIS) and Durhane Wong-Rieger (RDI) attended the event to represent the community of persons living with a rare disease and submitted a short written statement that will be part of the proceedings of the meeting.