National Fragile X Foundation - New Jersey Chapter
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.
We achieve our vision and mission with the support and focus on our Community through four strategic priority areas: Advocacy, Education, Research, and Treatment.
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.
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
- 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, 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
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
- 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 (FXCRC)
- Treatment Recommendations
- Fly With Me Fund
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Last Updated: 04/05/22
NFXF Research Readiness Program (National Fragile X Foundation)
The NFXF Research Readiness Program is a collaborative pipeline to support the development and execution of research in Fragile X-associated disorders. The program provides every researcher in the Fragile X field the opportunity to engage with experts and families to ensure proposed research is scientifically-sound, and patient-centric.
Sibling and Self Advocate Network (National Fragile X Foundation)
Bringing together those with Fragile X syndrome and their siblings to create lifelong friendships and a greater community of support, while building a better future.