Join the IPPF to Ensure the Rare Disease Community is Heard This Summer

During the summer recess, Congress returns to their home states to hear from constituents and attend community events. Meeting with them during this time is a critical opportunity for rare disease advocates to build relationships, educate them on key legislative needs and follow-up on requests made during Rare Disease Week on Capitol Hill or phone calls or emails about legislative issues since then.

As a FREE service to the rare disease community, Rare Disease Legislative Advocates (RDLA) will set-up a meeting for you and fellow advocates at your convenience. Any rare disease advocate is encouraged to join us for In-District Lobby Days, held from July 18th to September 5th. Registration is free and available online through Sunday, July 17th. You can specify when you are available during the summer recess and how far you are willing to travel for a meeting.

Please join the IPPF and other rare disease advocates at “In-District Lobby Days” where you can urge your senators and representatives to support 21st Century Cures and advocate for other legislation benefiting our community.

If you are interested in participating please email Marc Yale at and register at

RDLA will use the information you provided to schedule meetings for you, and the IPPF will help you prepare by providing key background materials.

It is up to each of us to ensure the voices of rare disease patients and caregivers are heard in Washington. Please help us tell Congress loud and clear: WE NEED CURES NOW!