Advocacy partner: National Fragile X Foundation

Since 1984, the National Fragile X Foundation has supported and empowered families impacted by Fragile X, by providing the knowledge, resources, and tools they need to navigate daily challenges and support individuals in reaching their full potential. Our work focuses on four strategic areas: promoting advocacy, providing education, advancing research, and improving treatments.

Contact: Kristin Bogart – Senior Director, Development and Communications
Phone: (800) 688-8765
Email: [email protected]

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What is Fragile X?

In this 90-second video, the National Fragile X Foundation answers the frequently asked question, “What is Fragile X?” by explaining Fragile X Syndrome, the premutation, and its associated conditions, as well as how Fragile X is inherited.

What is the Fragile X Premutation?

Learn what the Fragile X premutation is in just 90 seconds. This short animated video from the National Fragile X Foundation explains how the Fragile X premutation affects individuals and families—and why awareness matters.

Treatment and Intervention Recommendations for Fragile X

The NFXF’s family-friendly Treatment Recommendations are in-depth documents developed by NFXF staff, members of the NFXF’s Fragile X Clinical & Research Consortium (FXCRC), and other Fragile X professionals, and reviewed and edited by the entire FXCRC.

Transitioning to Adulthood Checklist

Transitioning into adulthood can be an overwhelming task. We’re here to help! Here is a helpful checklist of things to consider as your loved one with Fragile X syndrome ages.

Females with FXS Webinar Series: Health, Wellness & Fertility

The NFXF & LivJoy Foundation Present Females with Fragile X Syndrome Webinar Series: Health, Wellness & Fertility

We have assembled an incredible multidisciplinary panel to address specific questions from families and self-advocates about health, wellness, and fertility: Vicki Wilkins, Deby Barbouth, Heather Hipp, and Makenzie Woltz.

We anticipate topics to include talking about health and wellness broadly, touching on physical and mental health, and talking through puberty & sexuality, from menstruation through family planning options.

We are excited to have a special focus on females, as girls and women sometimes feel neglected and their needs are different. The goal is to address any differences or specifics to females with FXS how to live a healthy life (physically, mentally), navigate puberty & sexuality, and plan for their future.

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The information above is provided by our partner. Learn more about our advocacy partners here.