Action Alert: Help protect Medicaid, a program that provides healthcare coverage and support services for individuals, including those in the Fragile X community.
Dr. Kathryn Argue share tips for applying for PRMRP funding with Fragile X professionals.
Announcing FY 2025 federal research funding opportunities across two award categories available for all Fragile X-associated conditions and disorders.
Rhode Island families gathered for a night out at a local restaurant on April 12th to share experiences and stories.
Harmony Biosciences shares that they have reached their enrollment goal for the Phase 3 RECONNECT trial and screening into the trial has officially closed.
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
The Genetics of Fragile X can be confusing. We’ve developed a series of handouts to help explain how changes in the FMR1 gene happen, how Fragile X is inherited, and what CGG repeat ranges mean for individuals and families.
We’re on a mission to enroll 600 participants with FXS born in 2003 through 2020. We’re halfway there and need your superhero help to hit our target!
Susan Howell, Rena Pressman, Marisa Vomvos, and Kate Shelly joined us for a one-hour Q & A discussing the Genetics of Fragile X.
Action Alert- Protect the Department of Education to ensure continued protections for all students, especially members of the Fragile X community.
Advocating from home is a key part of ensuring continued support for individuals with Fragile X. Let’s work together to make our voices heard!
The Congressionally Directed Medical Research Program could face a 57% reduction in funding with the proposed continuing resolution.
We continue to see proposed changes this Congress that may have a significant impact on the Fragile X community. It’s more important than ever that your members of Congress hear directly from you — [...]
Yesterday, Kaerus Bioscience announced that it has successfully completed its Phase 1 trial and demonstrated 'proof of mechanism' with their novel BK channel modulator, KER-0193, being developed for Fragile X Syndrome!
Executive Director Hilary Rosselot welcomes the incoming class of 2025 Board Members. We look forward to working together to serve the entire Fragile X community.
