Can you join us this August for Congressional meetings for Fragile X?

Advocating for Fragile X families when members of Congress and their staff are in their home districts is key for three reasons:

  1. You don’t have to travel
  2. You generally have more time with them
  3. You underscore this is important to their constituents

This will be the third year we have partnered with Rare Disease Legislative Advocates (RDLA) to schedule meetings during the August recess. It has been a fruitful partnership. RDLA’s mission is to help rare disease patient groups advocate, and they work to schedule the meetings for you. This is a huge benefit! You may be scheduled with advocates for other diseases/disorders, but often our Fragile X advocates are the only ones who show up.

While August may seem an eternity away, registration is open if you are interested in participating. You can register with the link below.


If you are not already signed up for our STAR Local Advocacy program, please take a minute to learn about it and register. This is our program to help you advocate in-district all year long.