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Rare Disease Week on Capitol Hill


We are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2019 in Washington, DC from February 24 to February 28, 2019! The travel stipend application is open from now until December 14, 2018. You can find out more about the travel stipend program here.

Registration for Rare Disease Week on Capitol Hill 2019 will begin on January 3, 2019!

To find out about past Rare Disease Weeks on Capitol Hill, click the links to the right for archived materials and videos from our 2018 events.  If you’re just finding out about Rare Disease Week and RDLA, sign up for our email list and follow our Twitter and Facebook accounts for the latest information.


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 2019, 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.