Last week, 7 phearless phriends representing 3 states attended Rare Disease Week at Capitol Hill, hosted by the EveryLife Foundation for Rare Diseases. Rare disease advocates from all 50 states gathered for the legislative conference on February 25 to connect and learn about rare disease legislation and how it impacts patients. The legislative ask that the PPA was especially focused on this year was the Access to Genetic Counselor Services Act, H.R. 6280.
The following day, each phriend met with the Congressional representatives or legislative staff for their respective states. During the Senate Hearing, the expert witnesses focused on issues regarding the utilization of existing regulatory tools, such as the accelerated approval pathway and advisory committees; the need for consistency and transparency in the drug review process; ensuring ethical practices in rare disease clinical trials that do not result in unnecessary disease progression; and increasing domestic manufacturing transparency and speed to fulfill the United States’ innovation capabilities. You can read more about the Senate Hearing Recap here on the EveryLife Foundation’s page.
The Pheo Para Alliance is committed to advocating for accelerating the development of and access to rare disease therapies. You can still make your voice heard by writing or requesting a meeting with your Congressional representatives, either on Capitol Hill or when they are in their local district office. Share your story and why rare disease research and legislation matter to you! If you want to send a message to your congressional representatives in regards to support for H.R. 6280, you can use the following link.
A huge shoutout and thank you to our Phearless Advocates! You can view all of their amazing photos from Rare Disease Week at the Hill here!