Register now to join patients, caregivers, physicians and other advocates from across the country at the exciting events we have planned for Rare Disease Week on Capitol Hill.
We are thrilled to have leaders from the Food and Drug Administration (FDA) and the National Center for Advancing Translational Sciences (NCATS) of the National Institutes of Health (NIH) confirmed to participate in the Legislative Conference, and Dr. Robert Califf, Deputy Commissioner for Medical Products and Tobacco and nominee for FDA Commissioner, confirmed for the Lobby Day breakfast.
Registration is required for the events listed below, which are free and open to any rare advocate. You must attend the Legislative Conference in order to participate in Lobby Day, and register for both by February 17th to allow time to schedule your Hill meetings.
Rare Disease Week on Capitol Hill includes:
Monday, February 29th, 7:30am – 3:30pm: Rare Disease Day at NIH Registration is open and available here.
Shuttles will be available to transport advocates from NIH to the cocktail reception and documentary screening. Wheelchairs can be accommodated.
- Monday, February 29th, 5:30 – 9:30pm: Cocktail Reception and Rare Disease Documentary Screening featuring Dusty’s Trail: Summit of Borneo at the U.S. Naval Heritage Center
- Tuesday, March 1st, 8:30am – 5:30pm: Legislative Conference at FHI 360
- Wednesday, March 2nd, 7:30 – 9am: Lobby Day Breakfast at the Capitol Hill Club
- Wednesday, March 2nd, 9am – 5pm: Scheduled Meetings with Members of the House and Senate
- Thursday, March 3rd, 12-1:30pm, Congressional Rare Disease Caucus Briefing in the U.S. Capitol Visitor Center
- Thursday, March 3rd, 5-7pm: Rare Artist Reception in the Rayburn House Office Building
You can download a complete schedule of events with addresses and Metro stops here.
Preparatory Webinars
Advocates are encouraged to join us for both webinars to help prepare them for a productive experience. You can watch the first webinar, which provided an overview of the various events held during Rare Disease Week on Capitol Hill, here.
Registration is open for the second webinar, to be held on February 23rd at 2pm EST, which will provide more detailed advice to participants such as what to wear and what to bring for each event, and where to find additional resources. There will be an opportunity to ask questions.
Submit Your Unique Story for Rare Disease Week on Capitol Hill by February 15th.
If you are unable to join us for Rare Disease Week on Capitol Hill, you can still make a difference! Please submit your unique story as a patient or a caregiver with a photo by February 15th for advocates to hand-deliver to your Representative and Senators. Click to read more.
