I made it home from my week in Washington, D.C., for Rare Disease Week on Capitol Hill. It was an amazing experience and I am already looking forward to next year. If you ever get the chance to attend this event please do. I met so many interesting people and left with great friends.
A busy week
On the first day there was the welcome reception followed by “Share Your Story Day.” This was in the Ronald Reagan Building and International Trade Center. We focused on topics that would help us share our stories in our Capitol Hill meetings. There were different breakout sessions, and I chose “New Advocates: Welcome to Rare Disease Week” and “Share Your Story 101 for New and Developing Advocates.”
The following day was the Legislative Conference where we focused on different policy “asks” we would talk about in our Hill meetings. We had a session on each ask:
- Rare Disease Innovation Hub Infrastructure Appropriations Request.
- Support Congressional Action to Ensure Today’s Patients Will Benefit from Robust Rare Disease Treatment Pipelines.
- Credit for Caring Act.
- Genomic Answers for Children’s Health Act.
We ended the day preparing for successful meetings. All advocates received information on their Hill meetings, and we strategized with our teams to make the most of our meetings.
The third day was our scheduled Hill meetings. There were four of us from Louisiana; our team met with Representative Mike Johnson’s staffers in the Cannon House and Senator Bill Cassidy’s staffers in the Dirksen Senate Office.
Each of us presented a different ask. Mine was “Support Congressional Action to Ensure Today’s Patients Will Benefit from Robust Rare Disease Treatment Pipelines.” I discussed the importance of clinical trials: nearly 1,400 orphan drug therapies are changing the lives of patients, but 95% of rare diseases are still without an FDA-approved treatment. While sharing my story I also spoke about length of time finding a diagnosis and my life living with indolent systemic mastocytosis (SM).
We ended our last day in the Cannon House for the Rare Disease Congressional Caucus Briefing “Rare Disease: The time is now,” which focused on time-sensitive opportunities to optimize outcomes for this generation of rare disease patients. Also discussed were current policy solutions, newborn screening, advanced biomedical research and accelerated therapy development.
Throughout the week, we all made sure that we contributed to the social media blitz using the hashtag #RareDC2026 and taking pictures of our meetings on the Hill.
I learned so much participating in this event, and felt privileged to be there among all these wonderful people and their caregivers. I will never forget this amazing experience.
Taking in DC
My sister joined me on the trip. In the little spare time we had available we were able to visit the Lincoln Memorial, Washington Monument, World War II Memorial, Vietnam War Memorial and Arlington National Cemetery, where we saw the changing of the guard. We were also able to tour museums and the Library of Congress.
What I will never forget is Speaker Mike Johnson’s office setting up a tour of The White House for me and my sister, which was amazing.
We also had a private tour of The Capitol. We traveled the underground tunnels, learned so much history about the Capitol Building, sat in the Speaker’s Box and watched some of what was happening on the House floor. We took in the magnificent view of D.C. from the Speaker’s Balcony. I can go on for days talking about the Capitol Building tour and all we saw.
I ended my trip waiting in the airport for my plane to leave, and you will never believe who I was sitting just three seats down from. President Joe Biden. We were surrounded by Secret Service agents. Can you honestly believe that happened to me? As he got up to board his flight he turned and waved at me. What a way to end a wonderful week in Washington, D.C.
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