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Thank you to the more than 600 people who joined us for at least one of the events during Rare Disease Week on Capitol Hill this year! During this exciting week, rare disease community members from across the country learned about federal legislative issues, met other advocates, and shared their unique stories with legislators.  Below is a video from the 2015 Rare Disease Week on Capitol Hill, including testimony from advocates who participated.

What is Rare Disease Week on Capitol Hill?

Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

In 2018, the week of events will start with the Rare Disease Documentary Screening and Cocktail Reception on Sunday evening.

On Monday, advocates will attend RDLA’s Legislative Conference to learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build a relationship with Members of Congress and staff. The conference is crafted to educate advocates with little to no political experience and provide useful updates to those with a history of political action. Our aim is to have every advocate leave the Legislative Conference with confidence in their ability to make a difference on Capitol Hill.

On Tuesday, keynote speakers at breakfast will prepare attendees for their meetings with Members of Congress and staff. Advocates will put what they learned at the Legislative Conference to work as they advocate for the legislation most relevant to them in Lobby Day meetings.

On Wednesday, advocates will have the opportunity to attend the Rare Disease Congressional Caucus briefing, which will convene policy experts and rare disease stakeholders to educate Congressional staff and the public on issues of importance to the rare disease community. That evening, the EveryLife Foundation will host the Rare Artist Reception with artists from around the country displaying their work and sharing their experience with rare disease with Members of Congress and staff.

All events are free for patients, caregivers and other advocates but advance registration is required for each event.  Please sign up for our email list or check this page regularly. You can also follow RDLA on Twitter and Facebook for updates.

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2018 Rare Disease Week on Capitol Hill

Presented by:

Registration now open for all Rare Disease Week on Capitol Hill events.  Please click the name of the event you would like to register for.

Sunday, February 25th: Rare Disease Documentary Screening and Cocktail Reception
Presented by Amgen

Monday, February 26th: Legislative Conference

Tuesday, February 27th: Lobby Day Breakfast
Presented by Vertex Pharmaceuticals

Tuesday, February 27th: Lobby Day

Wednesday, February 28th: Rare Disease Congressional Caucus Briefing
Presented by Retrophin

Wednesday, February 28th: Rare Artist Reception
Presented by Biogen

Thursday, March 1st: Rare Disease Day at the National Institutes of Health

For a list of the events with dates, addresses and Metro stops, please click here.

Hotel Accomodations

Washington Court Hotel
525 New Jersey Ave NW, Washington, DC 20001
(Union Station Metro or Judiciary Square Metro)
Limited rooms available at discounted rate of $219 per night + 14% DC tax

Book now with the group name of EveryLife Foundation for Rare Diseases: 1-800-321-3010

Webinars

We hosted an informational webinar on Rare Disease Week on Capitol Hill 2018 on December 6th. The recording is available here.

The next webinar will be on February 15th at 2pm ET/11am PT. Everyone registered for any of our events during Rare Disease Week on Capitol Hill will be invited to participate.

Travel Stipends

Click here to apply for a travel stipend for Rare Disease Week on Capitol Hill.  The deadline to apply was December 10th. We are keeping the application open as we did not receive applications from every state. Anyone who applies after December 10th will go on the waitlist.

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