Updated March 2026
Find contact information for your members of Congress here.
Don’t stress, you will not be speaking to the member. You’ll be speaking to one of their aides and the calls only take a couple of minutes.
Hi, my name is [Name], I’m from [City, State], and I’m calling as a constituent.
I’m the [parent/family member/supporter] of a child with a rare disease, and I’m calling about urgent FDA delays affecting rare disease treatments.
At least 23 rare disease treatments have been delayed since the beginning of 2025.
Many of these diseases have no approved treatments and patients are experiencing permanent loss and decline as a result.
My child has Sanfilippo syndrome, a rapidly progressive disease where every month matters.
Children are losing the ability to walk, talk, and eat by mouth while we wait for the FDA to finally approve this drug.
There is a gene therapy that works, but it has been delayed twice by the FDA due to manufacturing inspection and paperwork, not because of safety or efficacy.
We’re not asking to lower safety standards.
We’re asking the FDA to use the flexibility Congress already authorized for rare diseases.
I’m asking [Senator/Representative] to help ensure oversight of the FDA by engaging with leadership and supporting Congressional Hearings on this issue.
Patients with rapidly progressive diseases cannot wait.
Can you let me know if they are aware of this issue or planning to take action?
OPTIONAL: I’d also like to request an [in-district or virtual] meeting to discuss this in person.
Thank you for your time.