Rare Disease Week: Meetings on Capitol Hill (February 27, 2026)

The day after the legislative conference, 800 rare disease advocates from across the U.S. descended on Capitol Hill to meet with our Congressional representatives' offices. It is always moving to hear the stories of patients fighting for years to get to the correct diagnosis or the right treatment, or any treatment at all. Half of all rare disease patients are children, and it was heartbreaking and inspiring to hear stories from the parents or the children themselves, battling for their lives with grit and eloquence. 

 

 

 

 

Meeting with Rep. Sarah Elfreth's office

This year I joined the Maryland delegation to meet with the legislative staff for Rep. Sarah Elfreth, Rep. Glenn Ivey, and Sen. Angela Alsobrooks. I ended up leading two of the meetings, and our asks included:

1) Support funding for FDA's newly established Rare Disease Innovation Hub to connect experts and industry and accelerate rare disease treatment development and approvals

2) Support the Access to Genetic Counselors Services Act (H.R. 6280) to expand insurance coverage of genetic counseling

3) Join the Rare Disease Congressional Caucus to stay up-to-date on rare disease issues and legislation

 

Meeting with Rep. Glenn Ivey's office

Last year we met with Rep. Elfreth's and Sen. Alsobrooks' offices just as they were getting established, and this year it was rewarding to see them be more informed and involved in rare disease issues. It is important to continue showing up and further developing our relationship with our Congressional representatives, as advocacy is a marathon and not a sprint.

 

Meeting with Sen. Angela Alsobrooks' office

Speaking of sprinting, I was quite tired after a day of walking between the House and Senate buildings, but an unexpected highlight was getting to ride the Senate subway from the Capitol.

 

Riding the Senate subway from the Capitol building

 

  

Now to rest as much as possible over the next few days before I return to work next week!