Rare Disease Week 2020
Rare disease legislative advocacy is an important step to ensure the voice of the superficial siderosis community is heard. Rare disease week on Capitol Hill allows patients, caregivers, advocates, and rare disease patient advocacy organizations an opportunity to discuss the issues face-to-face with Members of Congress and their staff. To receive first-hand knowledge on federal legislative issues, meet with other advocates, and share their communities’ unique stories with their legislators.
The Rare Disease Week on Capitol Hill Legislative Conference and Hill Day is an event established for patients and caregivers, patient advocates, and patient advocacy organizations. While representatives from industry are invited to attend the Legislative Conference, the Hill day is for patients and caregivers, patients advocates, and patient advocacy organizations only. (RDLA Website)
Rare disease community advocates from around the country will gather for Rare Disease Week on Capitol Hill 2020 in Washington, DC from February 25-28, 2020. Registration for Rare Disease Week 2020 will open on January 3, 2020, on the RDLA website.
Event Schedule
Tuesday, February 25th, TBD: Rare Disease Congressional Caucus briefing and Group Photo, Capitol Hill
Tuesday, February 25th, 5:30 to 9:00 pm: Cocktail Reception and Rare Disease Documentary Screening
Wednesday, February 26th, 8:00 am to 4:45 pm: Rare Disease Advocate Legislative Training Conference
Wednesday, February 26th, 5:00 to 6:00 pm: SSRA Meet and Greet, Hosted by Kyle Dempsey, Founder SSRA
Thursday, February 27th, 7:00 to 8:30 am Hill Day Breakfast
Thursday, February 27th, 9:00 am to 5:00 pm: Scheduled Meetings with Members of the House and Senate on Capitol Hill
