Rare Disease Week this year was July 14th-22nd and held virtually. With over 600 participates advocating for those living with a rare disease diagnosis and 250 patient organizations, this event’s 10 year anniversary was widely successful.
The 2021 event was held by the Rare Disease Legislative Advocates Program (RDLA), which was formed by the EveryLife Foundation.
Its aim was to build community amongst advocates, and most important, share the needs of the rare disease community with policymakers. For the 2021 event, there were 367 meetings to discuss issues with legislators.
Thankfully, the next Rare Disease Week will be able to happen in person, from February 28th to March 2nd, 2022.
The 2021 Event Highlights
Although we can’t share every detail of the event here, we can share some highlights.
The week started with a Congressional caucus briefing. This briefing discussed therapy development as well as current challenges to such development.
Also on the very first day, a film on myasthenia gravis was shared. Afterword, there was a discussion about how patients are handling COVID-19.
Another notable event was the announcement of the 2020 Rare Artist Contest, where artists showed not only their art but their own patient stories.
The very first Young Adult Representatives of the RDLA leadership academy graduating class were also recognized. These individuals have all completed an array of online classes with the aim of teaching advocacy for patients. The graduating class got to network following the graduation and take a cooking class together. The class was based on The Rare, Chronic, and Deliciously Iconic Cookbook, whose sale proceeds go to Odyssey, which is a nonprofit that supports young adults who live with a rare diagnosis.
The legislative congress at the beginning of the week helped attendees to prepare for their meetings with Congress. Then, at the end of the week, on “Hill Day,” they had the opportunity to speak with legislators directly. There were various goals including the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT Act) which aims to make sure that patients’ needs are fully accounted for when reviewing therapies. Additionally, the Speeding Therapy Access Today (STAT) Act aimed to accelerate rare disease therapy development. Further, the Newborn Screening Saves Lives Reauthorization Act which is currently awaiting Senate approval was discussed. This act works to expand the newborn screening program at the federal level. Finally, the Access to Genetic Counselor Services Act was discussed which would, if passed, allow genetic counselors to directly bill Medicare.
The last day focused on health disparities and underrepresented rare disease patients.
You can read more about this event and the impact it could have here.
