The National Fragile X Foundation serves all those living with Fragile X, focusing on Advocacy, Education, Research, and Treatment with Community at the heart of everything we do.
Our Mission is 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.
Our Vision is a world where every family is empowered to successfully navigate the Fragile X journey.
Our Priorities are to achieve our mission and vision with the support and focus on our Community through four strategic priority areas: Advocacy, Education, Research, and Treatment.
Our Four Strategic Priority Areas
Below are some of the programs within Advocacy, Education, Research, and Treatment. Many overlap, but they all work together toward our mission and vision of enabling Fragile X families to live their best lives.
Promoting Advocacy
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: contact us with your questions, we’re here to help: contact@fragilex.org
- 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
Providing Education
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, articles, treatment recommendations, and more
- Fragile X MasterClass™ Series: Online, knowledge-based, certification courses
- NFXF International Fragile X Conference: Multi-day in-person and online biennial event
Advancing Research
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.
- NFXF Data Repository
- Research Readiness Program™
- FORWARD-MARCH Database
- Research Opportunities: Find studies and trials to participate in with MyFXResearch
- International Fragile X Premutation Registry
- Summer Scholars™
- Junior Investigators
Improving Treatment
We seek to improve access and availability of informed treatment options to promote knowledge for all patients with Fragile X.
- Fragile X Clinical and Research Consortium: U.S. and international clinics specializing in Fragile X
- Treatment Recommendations
- Fly With Me Fund
Please contact us with any questions you have about our mission, vision, values, priorities, and how we can help you.
Meet Some Xtraordinary Individuals
Our community lets us know of xtraordinary people doing xtraordinary things. From self-advocates to caregivers, families, educators, and clinicians, meet a few of these very xtraordinary people.
What makes Kaylin Xtraordinary to you?
Kaylin is walking sunshine! She beams joy, kindness, and love every day. She has her struggles, but she amazes us every day with how far she has come and how far we know she will go!
What makes Bramel Xtraordinary to you?
Bramel has faced many obstacles in his short nearly four years of life. Bramel is one of the strongest little humans with one of the biggest hearts and I am so proud to be able to call him my son.—Maggie Lucas
What makes Christine Xtraordinary to you?
Kind. Generous, helpful. Gives with all her heart! She goes out of her way to make people happy! She is such a wonderful addition to our staff! She is a true gem!