Thank you!
900 Rare Disease Advocates
393 Meetings with Congress
227 Patient Organizations
1 Amazing Rare Disease Week!
Thank you to the more than 900 rare disease advocates who traveled from across the country to join us during Rare Disease Week on Capitol Hill 2020, February 25th – 28th! Advocates participated in 393 meetings with Members of Congress to carry the message: “Every voice matters!”
227 patient organizations were represented, united in a common goal: To make their rare voices heard.
Rare Disease Week on Capitol Hill, hosted by the Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, is designed to educate and activate advocates and to foster relationships within the community.
Rare Disease Congressional Caucus Briefing
Rare Disease Week 2020 kicked off with a standing-room-only Rare Disease Congressional Caucus Briefing at the Russell Senate Office Building, featuring Caucus Co-Chair Representative Gus Bilirakis (FL).
The briefing, entitled “Accelerating Rare Disease Innovation Across the Pipeline From Discovery to Access”, was moderated by Frank Sasinowski, EveryLife Board Vice-Chair and Director at Hyman, Phelps & McNamara and featured:
- Adeola Adesina, Legislative Assistant, Office of Representative Eric Swalwell
- Debbie Jessup, Policy Advisor, Office of Representative Lucille Roybal-Allard
- Thomas Rice, Legislative Director, Office of Representative Michael McCaul
- Larry Bauer, Senior Regulatory Drug Expert, Human, Phelps & McNamara.
Group Photo on the Capitol Steps!
Documentary Screening
Rare Disease Week 2020 continued with a special screening of the documentary film Tin Soldiers. The film shines a light on a debilitating disease, the hunt to find a cure, and the search for those still locked in darkness.
The screening was followed by a panel discussion on the challenges of finding other patients with ultra-rare disease, featuring:
- Moderator: Mark Dant, Chair, Board of Directors, EveryLife Foundation for Rare Diseases; Founder, The Ryan Foundation
- Christian Rubio, VP of Strategic Advancement, Global Genes
- Amanda Cali, Executive Producer, Tin Soldiers documentary; Trustee, The Radiant Hope Foundation; FOP Parent and Advocate
- Melissa Bryce Gamble, Co-Founder and Executive Director, Global Foundation for Peroxisomal Disorders
- Carlos Cristi, IgA Nephropathy (Berger’s Disease) Patient Advocate
- Eve Dryer, Executive Director, Patient Advocacy, Retrophin
Legislative Conference
More than 600 advocates attended the Legislative Conference at the Ronald Reagan Building and International Conference Center, with an additional 135 participating remotely via livestream.
Advocates learned about rare disease policy, prepared for their meetings with Members of Congress, and networked with fellow advocates. Breakout sessions focused on topics including: accelerating treatments for rare diseases, improving access to treatments for rare diseases, engaging in state advocacy, and advocating as a young adult.
Advocates were also given the opportunity to practice telling their story on camera at the Fast Forward for RARE video suite. SmithSolve and RDLA partnered to bring this resource to advocates, offering one-on-one coaching and footage of their pitch.
Young Adult Meetup
Wednesday night, the Young Adult Representatives of RDLA (YARR) gathered at the Rare Hub, the new D.C. headquarters of the EveryLife Foundation, to discuss the day’s events. YARR is a highly motivated group of 16-30 year-olds from the rare disease community.
Hill Day Breakfast
Thursday morning, advocates fueled up at the Hill Day Breakfast at the Ronald Reagan Building. Joel Wood, parent advocate and Senior Vice President, Government Affairs at the Council of Insurance Agents and Brokers, energized advocates for their meetings with Members of Congress.
View Hill Day Breakfast photos.
Pictured left: Annie Kennedy, EveryLife Foundation for Rare Diseases Chief of Policy and Advocacy and Joel Wood.
Hill Day
Rare disease advocates converged on Capitol Hill, participating in 393 meetings with Members of Congress, making it our biggest Hill Day ever! During these meetings, advocates encouraged their Members to join the Rare Disease Congressional Caucus; support the creation of a Rare Disease Center of Excellence at the U.S. Food and Drug Administration (FDA); and increase funding for the FDA Orphan Products Clinical Trial Grants Program and the Natural History Grants Program. In addition, they urged their Members to support various rare disease legislation and policies, including but not limited to: the Newborn Screening Saves Lives Reauthorization Act, the Better Empowerment Now to Enhance Framework and Improve Treatments Act, and the Medical Nutrition Equity Act.
Thanks to their efforts, at least nine Members of Congress joined the caucus, including: Rep. Emanuel Cleaver (MO-5), Rep. Antonio R. Delgado (NY-19), Senator Charles Grassley (IA), Rep. Dusty Johnson (SD-AL), Senator Doug Jones (D-AL), Rep. Bob Latta (OH-5), Rep. Ted Lieu (CA-33), Rep. Ralph Norman (SC-5), and Rep. Martha Roby (AL-2). These new Members bring our total number of Rare Disease Congressional Caucus members to 170!
Many more Members expressed interest in joining the caucus. If you attended Hill Day, we encourage you to follow up with your Members. If you did not attend, it’s not too late to contact your Members. Click here to ask your Member to join the Caucus.
Pictured left: Kentucky advocates with Senate Majority Leader Mitch McConnell.
Rare Artist Reception
On Thursday evening, advocates attended the Rare Artist Reception at the Hart Senate Office Building, featuring artwork from the 2019 Rare Artist Awardees. We were honored to have Rare Artists attend and share their stories.
2016 Rare Artist Contest Awardee Pat Guerre and his wife Gina traveled from California to attend and raise awareness about Kneading Hope, a nonprofit that provides art sets to children diagnosed with rare diseases.
We were also joined by Rep. Greg Murphy (NC-03), Rep. Paul Tonko (NY-20) who is pictured right with 2019 Rare Artist Awardee Jennifer Virag, and Rep. Andy Levin (MI-9) who is pictured left with 2019 Rare Artist Awardee Darienne Majeke.
The 2020 Rare Artist Contest will open June 16th. Please follow Rare Artist Contest on Facebook for contest announcements.
Share Your Rare Experience Awardee
Congratulations to Andre Marcel Harris who was the #RareDC2020 Share Your Rare Experience Contest Awardee! Andre will receive an $800 travel stipend to attend for #RareDC2021.
Thank you to everyone for snapping and sharing your amazing rare experience during #RareDC2020!
Rare Disease Week on Capitol Hill 2020
Program Book
STAY ENGAGED
August 3rd – September 7th, 2020
Registration Opens May 4th
STAY CONNECTED
SAVE THE DATE
Rare Disease Week on Capitol Hill
July 19th – 22nd, 2021
WHAT ADVOCATES ARE SAYING ABOUT RARE DISEASE WEEK 2020
(Attendee responses to our Rare Disease Week 2020 survey)
“The entire event and all activities encouraged me to see how people care for each other when they don’t see any hope elsewhere.”
“I felt so energized and inspired by the event, and it was very well-organized!”
“I would do it again in a heartbeat, it felt great to be valued and heard. It gave me purpose and I was inspired when I came home.”
“Fantastic week, by far the best patient advocacy event. Thank you all for your hard work!!”
“Thank you. Our voice was heard. You did an excellent job with content, training, etc.”
“I cannot wait to come back and learn more next year!”
“Great opportunity to connect with the rare disease community, continue building relationships and exchanging information about effective advocacy.”
“I have attended for several years and this event continues to grow and improve every year. I am thankful for the opportunity.”
“Wonderfully organized event. We found it to be very informative, educational and rewarding!”
“As a rare disease patient, it’s important to make our voices heard so we are considered in this climate of healthcare reform, especially considering our preexisting conditions may not be protected in future regimes.”
“It was great and very well run. Thank you for providing such wonderful information that I will use going forward when I continue to advocate on behalf of rare diseases.”
“This was a very informative and organized event. It was a great way to network, learn, and advocate.”
“It’s a fantastic conference, you go above and beyond! It’s great outlet for the rare community.”
“Overall what a wonderful experience. I learned a lot about other diseases, health policies and met many new friends!”
THANK YOU TO OUR SPONSORS
