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Thank You Rare Disease Week 2018 Attendees!

Thank you to everyone who attended Rare Disease Week on Capitol Hill 2018 in-person and via livestream!  Plans are already underway for Rare Disease Week 2019, but in the meantime, 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.

If you’re looking to engage your elected officials before Rare Disease Week 2019, our RARE on the Road Advocacy Tour and In-District Lobby Days programs will offer rare disease advocacy opportunities this coming Summer.

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 is now closed for all Rare Disease Week on Capitol Hill events.  Below you will find a list of dates and locations for the week’s activities.

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

Webinars

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

We hosted a second informational webinar on February 15th to prepare registrants for Rare Disease Week on Capitol Hill 2018. The recording is available here.

We hosted a webinar for Lobby Day team leaders on February 22nd.  The recording is available here.

Travel Stipends

The application for travel stipends is now closed.  We would like to thank our generous sponsors for assisting us in bringing 100 advocates to Rare Disease Week on Capitol Hill.

Presented By