We sent a letter to members of the House and Senate Appropriations Committees regarding FY23 funding. The House bills that fund HHS and FDA both established double digit percentage increases in funding; we thanked House lawmakers for their continued support of these vital programs and encouraged Senate lawmakers to follow their colleagues’ lead. We also took the opportunity to call for the creation of a Rare Disease Program. In the HHS bill, there were provisions that requested more attention be given to rare disease research and funding, but made no funds available. Rare and ultra-rare disease patients could see a world of difference if such a program were to be established.
Patients Rising Now Calls on Lawmakers to Create Federal Rare Disease Program