Rare Disease Week Recap on Capitol Hill 2024
If you follow me on social media, you know I had an incredible week in Washington DC advocating for rare diseases on Capitol Hill at the end of February. This event was hosted by the Everylife Foundation for Rare Disease. There were a few different aspects of this trip that made it so memorable, like diving deep into rare disease legislation and issues, connecting with a powerful rare disease community, and lastly, I value spending time traveling alone and exploring one of my favorite cities.
Diving Deep into Rare Disease Legislation and Issues
The first full day in Washington DC consisted of an all-day legislative conference. It started with various speakers, including speeches from advocates and patient engagement leaders from the Everylife Foundation, keynote speakers and the legislative outlook for 2024. They provided legislative asks to ask our congressmen the next day. We did deep dives into policy asks and learned exactly what we were asking for and why.
Here are the legislative asks they provided:
Support the Creation of an Interagency Coordinating Committee for Rare Diseases
2. Accelerating Kids’ Access to Care Act
3. Rare Pediatric Disease Priority Review Voucher Program (This one is a reauthorization)
5. Rare Disease Congressional Caucus.
If you would like to dive deeper, head to this page. You can see a one-pager by clicking on the link.
Connecting and Building Relationships within the Rare Disease Community
Having a rare disease, it makes sense that I don't have many friends in real life with FA (not including social media! To read about my thoughts on social media, go here), so to go into this event with over 800 advocates is truly a surreal feeling. I always felt safe and welcome.
One speaker deemed us all powerful changemakers. You’re in a room full of people who have lived experience with rare diseases and are choosing to advocate for changes. It’s an incredible energy to be surrounded with.
Networking becomes less daunting as it is so easy to talk to anyone in attendance. You know there is already either shared experience or shared passion. Lifelong, deep friendships were made.
Traveling and Exploring
If you’ve been following me, you know how much I value traveling alone and think everyone needs to at least try a solo outing. Rare Disease Week was jam-packed with social engagements, which was a lot for an introvert like me. I knew I’d want to explore Washington DC on my own, so I booked my flight home a day later, and stayed an extra night.
I ventured to a cute bakery/café and walked (rolled) through the city for an hour to The National Gallery of Art. I spent 5 hours wandering the majestic halls of the enormous buildings. I actually had to rush back to the coat check before it closed.
I spent the evening with friends eating Thai takeout and having a movie night.
All in all, it was an incredible week! (Despite some hotel trouble). If you have a rare disease or love someone with a rare disease and are interested in making a difference, I highly recommend attending next year!
