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Rare Disease Week on Capitol Hill 2019

Thank you to the hundreds of rare disease advocates, caregivers, family members, friends, and industry who attended events in Washington, DC during Rare Disease Week on Capitol Hill 2019. Read more about this powerful week here.

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 will open in January 2020.

Tentative Schedule of Events

The week includes the following events, all of which are free for patients, caregivers and other advocates.

Tuesday, February 25th: Rare Disease Congressional Caucus briefing

Tuesday, February 25th: Cocktail Reception and Rare Disease Documentary Screening

Wednesday, February 26th, 8:00 am – 4:45 pm: Legislative Conference at the Ronald Reagan Building.

Thursday, February 27th: Lobby Day Breakfast

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

Thursday, February 27th: Rare Artist Reception

Friday, February 28th: Rare Disease Day at NIH in Bethesda, MD

The Rare Disease Week on Capitol Hill Legislative Conference and Lobby 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 lobby day is for patients and caregivers, patients advocates, and patient advocacy organizations only.

TRAVEL ARRANGEMENTS

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

LEARN MORE

To find out about past Rare Disease Weeks on Capitol Hill, click the links to the right.

We encourage you to watch our webinar to learn more about traveling to Rare Disease Week on Capitol Hill. The next webinar to help prepare advocates for Rare Disease Week on Capitol Hill will be on February 14th at 12 pm EST.

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.

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 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.

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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.

Schedule of Events

Below is the tentative schedule for Rare Disease Week on Capitol Hill 2020.

Tuesday, February 25th: Rare Disease Congressional Caucus briefing

Tuesday, February 25th: Cocktail Reception and Rare Disease Documentary Screening

Wednesday, February 26th, 8:00 am – 4:45 pm: Legislative Conference at the Ronald Reagan Building.

Thursday, February 27th: Lobby Day Breakfast

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

Thursday, February 27th: Rare Artist Reception

Friday, February 28th: Rare Disease Day at NIH in Bethesda, MD

Travel Stipends

The 2020 travel stipend application will open October 1, 2019. Please check back at a later time for instructions on applying for a travel stipend for Rare Disease Week 2020.

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