VIRTUAL RARE DISEASE WEEK ON CAPITOL HILL

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

Advocates can win a grant for their rare disease organization! Learn more.

Semana de las Enfermedades Poco Frecuentes en español

If you have any questions, email Katelyn, RDLA Coordinator, at klaws@everylifefoundation.org.

You’re registered for Rare Disease Week…so now what?

Get ready for your Hill Day meetings by choosing and practicing your legislative ask.

Suggested Legislative Asks:

Wednesday, July 14

1:00 – 2:00 p.m. ET
Rare Disease Congressional Caucus Briefing: “Rare Disease Therapy Development: Existing Challenges and Proposed Innovative Solutions”
Convenes policy experts and rare disease stakeholders to educate Congressional staff, the public, and advocates on issues of importance to the rare disease community.

6:00 – 7:30 p.m. ET
Rare Disease Documentary Screening
A unique event with a film screening and stakeholder panel discussion following a welcome reception.

This year’s film selection is A Mystery to Me, directed by Ben Strang, in association with Kartemquin Films and Museum + Crane. A Mystery To Me is the first documentary about myasthenia gravis (MG), a rare chronic autoimmune disease that causes debilitating and potentially life-threatening muscle weakness in individuals of all ages, many of whom are unaware of the disease and unable to be accurately diagnosed or get help.

Learn more

Thursday, July 15

1:00 – 5:00 p.m. ET
Legislative Conference Day 1 (View Agenda)
The event helps advocates learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build relationships with Members of Congress and staff.

1:00 p.m. ET Session 1
2:00 p.m. ET Session 2
3:00 p.m. ET Session 3
4:00 p.m. ET Networking Happy Hour

5:00 p.m. ET
Rare Artist Gallery Opens
Meet the 2020 Rare Artist Contest Awardees and view their artwork.

Friday, July 16

1:00 – 5:00 p.m. ET
Legislative Conference Day 2 (View Agenda)
The event helps advocates learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build relationships with Members of Congress and staff.

1:00 p.m. ET Networking Brunch
2:00 p.m. ET Session 1
3:00 p.m. ET Session 2
4:00 p.m. ET Session 3

5:15 – 6:00 p.m. ET
YARR Leadership Academy Graduation
Meet the first graduating class of the YARR Leadership Academy. YARR (Young Adult Representatives of RDLA) is a highly motivated group of 16-30 years-olds who are building the next generation of rare disease advocates.

6:00 – 7:00 p.m. ET
YARR Meetup

The Young Adult Representatives of RDLA (YARR) will gather following the Legislative Conference to discuss the day’s events, network with one another and participate in a cooking class! All young adults in the rare community are invited to attend who are within the age group of 16-30 years old. We will be featuring a recipe from The Rare, Chronic, and Deliciously Iconic Cookbook. The first 50 to register will receive a copy of the cookbook sent to them with an Amazon gift card to purchase ingredients prior to the event. All proceeds of the cookbook go to Our Odyssey. Click here to register.

Tuesday, July 20th

12:00 – 5:00 p.m. ET
Virtual Meetings with Representatives
Advocates put what they learned at the Legislative Conference to work at meetings scheduled for them with Members of Congress and Staff.

Wednesday, July 21st

12:00 – 5:00 p.m. ET
Virtual Meetings with Senators
Advocates put what they learned at the Legislative Conference to work at meetings scheduled for them with Members of Congress and Staff.

Thursday, July 22nd

2:00 – 3:30 p.m. ET
Diversity Roundtable

A concurrent series of roundtable discussions for patient advocates, industry leaders, and community stakeholders to participate in inclusive conversations about the barriers to care for underserved rare disease communities and the policy solutions that can make a difference.