Rare Disease Week on Capitol Hill 2020

We are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2020 in Washington, DC from February 25-28, 2020!

Registration for Rare Disease Week on Capitol Hill 2020 is open.

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.


Attendees need to make their own travel arrangements including hotel reservations. Below are hotel options.

Courtesy Room Block at the Washington Plaza Hotel   at 10 Thomas Circle, NW, Washington, DC (.8 miles to Ronald Reagan Building). Click the link or call 800.424.1140 to make a reservation (reference the EveryLife Foundation for Rare Diseases).

List of hotel options in Washington, DC

Getting Around Rare Disease Week: Accessibility Resources


Register for the in-depth webinar on February 13, 2020 at 1 pm EST/10 am PST o learn more about Rare Disease Week on Capitol Hill 2020 here.

View the Rare Disease Week information webinar from December 12, 2019.

Also, we encourage you to sign up for our email list and follow our Twitter, Facebook, and Instagram accounts for the latest information.

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 2020, the week of events will start on Tuesday afternoon with 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. On Tuesday evening, advocates will gather for the Rare Disease Documentary Screening and Cocktail Reception.

On Wednesday, 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 Thursday, 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 Hill Day meetings.

On Thursday 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, Facebook, and Instagram for updates.













Travel Stipends

The travel stipend application for 2020 closed on December 2, 2019. Applicants will be notified by December 20, 2019, whether they will be awarded a travel stipend or have been placed on the waitlist.

Only one stipend per family can be awarded.

If you have any questions about travel stipends, please email svonfelden@everylifefoundation.org.

Schedule of Events

Below is the schedule for Rare Disease Week on Capitol Hill 2020. Download the schedule of events here.

Monday, February 24th, 9:00 am-5:00 pm: FDA Rare Disease Day 2020 Public Meeting, FDA, 10903 New Hampshire Ave, Silver Spring, MD

Tuesday, February 25th, 1:00-2:00 pm: Rare Disease Congressional Caucus briefing and Group Photo, Capitol Hill, Russell Senate Office Building, Room 325

Tuesday, February 25th, 5:30 to 9:00 pm: Cocktail Reception and Rare Disease Documentary Screening, Ronald Reagan Building, 1300 Pennsylvania Ave. NW

Wednesday, February 26th, 8:00 am to 4:45 pm: Legislative Conference at the Ronald Reagan Building, Ronald Reagan Building, 1300 Pennsylvania Ave. NW

Wednesday, February 26th, 6:00 to 8:00 pm: YARR (Young Adults) Meetup, 1012 14th Street NW, Washington, DC

Thursday, February 27th, 7:00 to 8:30 am: Hill Day Breakfast, Ronald Reagan Building, 1300 Pennsylvania Ave. NW

Thursday, February 27th, 9:00 am to 5:00 pm: Scheduled Meetings with Members of the House and Senate on Capitol Hill

Thursday, February 27th, 5:00 to 7:00 pm: Rare Artist Reception, Capitol Hill, Hart Senate Office Building, Room 902 (Use North elevators)

Friday, February 28th, 8:30 am to 4:00 pm: Rare Disease Day at NIH in Bethesda, MD, 9000 Rockville Pike, Bethesda, MD

Saturday, February 29th, 11 am to 2:30 pm: NORD’s Rare Disease Day: Mission 2020 at the International Spy Museum, 700 L’Enfant Plaza, SW, Washington, DC

Webinars from 2019

To learn more about Rare Disease Week on Capitol Hill, you may watch the informational webinars from 2019.

View the first informational webinar here.

View the second deep policy dive webinar here.