Thank you to the 750+ rare disease patients, caregivers, researchers and other advocates who joined us during Rare Disease Week on Capitol Hill 2018, which took place February 25th through March 1st.
The week kicked off on Sunday evening at our 8th annual Rare Disease Documentary Screening and Cocktail Reception. The capacity crowd was treated to a screening of The Ataxian, which follows the journey of Freidreich’s Ataxia patients Kyle Bryant and Sean Baumstark as they bike across the United States. Following the screening, Kyle and Sean were on-hand to take questions from the crowd, with topics ranging from their lives with Freideich’s Ataxia to the filmmaking process.
On Monday, more than 450 advocates joined us in-person for the Legislative Conference, with more than 125 participating remotely through the event livestream. Experts from Capitol Hill and patient advocacy organizations discussed what to expect from Congress following changes to the Orphan Drug Tax Credit, how to build effective relationships with Members of Congress and their staff, and key pieces of legislation for 2018. Video and presentations will be available on the Legislative Conference resource page.
Tuesday morning, advocates began Lobby Day at breakfast with remarks by Joel White, Founder and President of Horizon Government Affairs. Mr. White was followed by Dr. William Gahl, Head of the Undiagnosed Diseases Program at the National Institutes of Health (NIH) and Debra Lewis, who serves as Acting Director of the Food and Drug Administration’s Office of Orphan Product Development. Advocates left the breakfast energized by the speakers and ready to educate Members of Congress and their staff about issues affecting the rare disease community.
And educate they did! In all, 371 advocates representing 49 states participated in a total of 294 Lobby Day meetings, discussing the Rare Disease Congressional Caucus, precision medicine legislation, incentives for rare disease drug development and other key legislative topics. Thanks to these advocacy efforts, the Rare Disease Congressional Caucus picked up 4 new members in the Senate and 9 in the House.
Wednesday’s events began with a Rare Disease Congressional Caucus briefing, titled “The Rare Disease Lifecycle: Diagnosis to Treatment.” Caucus Co-Chair Representative Leonard Lance (R-NJ) welcomed advocates and Congressional staff before our expert panel covered several topics affecting the rare disease community. Videos from the briefing are available here.
On Wednesday evening, we hosted the annual Rare Artist reception, which featured winning entries from the 2017 Rare Artist contest. We were honored to have seven awardees in attendance speak about the importance of art as therapy and the struggles they experience as rare disease patients. Also on display were photographs from Rick Guidotti’s Positive Exposure campaign, which put the beauty of rare disease patients on display for all to see.
We closed the week at the NIH, where EveryLife staff was on hand to meet attendees and provide information about our programs assisting the rare disease community.
After another successful year, we want to thank everyone who participated in Rare Disease Week on Capitol Hill in-person and remotely. Your support and appreciation means the world to us. We hope to see even more of our vibrant community in 2019!