Our Vision, Mission and Priorities
Fragile X syndrome is the most common inherited intellectual and developmental disability. Up to 1.5 million Americans have the gene premutation, and up to 100,000 Americans have Fragile X syndrome.
The National Fragile X Foundation serves all those living with Fragile X with a focus on Advocacy, Education, Research, and Treatment with Community at the heart of everything we do.
A world where every family is empowered to successfully navigate the Fragile X journey.
To serve the entire Fragile X community to live their best lives by providing the knowledge, resources, and tools until, and even after, more effective treatments and a cure are achieved.
We achieve our vision and mission with the support and focus on our Community through four strategic priority areas: Advocacy, Education, Research, and Treatment.
Below are some of the programs within each area. Many overlap, but they all work together toward our mission and vision of enabling Fragile X families to live their best lives.
We promote effective ways for families to successfully advocate for themselves and their children to meet the ongoing challenges of the Fragile X journey. Programs include:
- Personalized Support Services
- Annual Awareness Month in July
- Year-Round Legislative Advocacy Program
- Community Support Network
Local volunteer-led support groups
- Virtual Community Social Events
For parents, siblings, and self-advocates
We provide valuable tools and resources to families to help manage the day-to-day challenges of life with Fragile X.
- Comprehensive and current on-demand content
Webinars, e-books, Fragile X Info Series, articles, and more
- Fragile X MasterClass™ Series
Online, knowledge-based, certification courses
- NFXF International Fragile X Conference
Multi-day in-person and online biannual event
We facilitate research activities for families and professionals, underlining their value in the research process and how their active participation advances effective treatments and a cure.
We seek to improve access and availability of informed treatment options to promote knowledge for all patients with Fragile X.