- What is Fragile X
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Talking about Fragile X
Fragile X is complex and can be challenging to explain. We developed handy talking points that make it easier to share information, spread awareness, and start conversations with the people in your life.
- 31 Shareable Facts About Fragile X
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- Fragile X Syndrome
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- The Fragile X Premutation
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The Basics
- The Fragile X PremutationAs many as 1.5 million people in the U.S. have the premutation, many unknowingly.
- Understanding the Premutation Range of SymptomsThe best way to obtain care is to share and focus on the symptoms.
- Reproductive ResourcesFamily planning resources include carrier screening, reproductive options, and associated costs.
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Fragile X-Associated Conditions
- Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)Fragile X-associated tremor/ataxia syndrome, or FXTAS, is a late-onset neurodegenerative disorder seen more commonly in males.
- Fragile X-Associated Primary Ovarian Insufficiency (FXPOI)Fragile X-associated primary ovarian insufficiency, or FXPOI, causes the ovaries to lose their normal function.
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- Resources
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- Research
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Participate
- Research OpportunitiesSearch for a Fragile X study or trial that’s right for you.
- The International Fragile X Premutation RegistryLearn more about the registry and begin your enrollment.
- FORWARD-MARCH Database and RegistryStudies made possible because of the database, and how you can participate.
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Learn more
- Research News & ResultsCurated summaries of important Fragile X research studies.
- NFXF Research ArticlesOriginal research written by FXCRC and NFXF professionals addressing critical needs in research and treatment.
- Research 101The ultimate guide for understanding Fragile X research and treatment development.
- Patient-Focused Drug Development Meeting for FXSThe recording and final report from our FDA PFDD meeting for Fragile X syndrome.
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For Researchers
- NFXF Research Readiness ProgramOur support and facilitation services for researchers.
- NFXF Data RepositoryProviding previously inaccessible data to researchers and investigators.
- NFXF Research AwardsBecome a Randi J. Hagerman Summer Scholar or NFXF Junior Investigator.
- International Fragile X Premutation Registry Recruitment RequestApply to utilize the registry for your recruitment purposes.
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- Get Involved
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The Fragile X Community
- Xtraordinary IndividualsMeet Xtraordinary individuals who are making a difference.
- NFXF Community Support NetworkFind an NFXF chapter, community partner, or community contact.
- Meet Our DonorsInspiring community members providing unwavering support for all Fragile X families.
Donate
- Donate to the NFXFMake a real difference in the lives of ALL those impacted by Fragile X.
- Find a FundraiserFragile X community members raising funds to advance our mission.
- Ways to GiveOther ways you can make a contribution and support our mission.
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Advocacy
- Advocacy ProgramsYour participation moves the needle for important research funding and policies.
- NFXF Advocacy DayShow up, tell your story, and educate Congress on how to make a difference.
Events
- Fragile X Awareness MonthWe do this every day, but July is a special month to make a concerted effort!
- X StridesEnjoy your favorite way to move while raising awareness and funds.
- NFXF International Fragile X ConferenceThe premier educational event for the Fragile X community.
- Events CalendarUpcoming webinars and local events.
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- About NFXF
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The Organization
- Our Mission and VisionWe serve all those living with Fragile X with a focus on advocacy, education, research, and treatment, with community at the heart of everything we do.
- Financials and ImpactAudited financial statements, government certifications, independent certifications, and an annual impact report based on our audited financial statements.
- Corporate SponsorsCorporate sponsors support our current programs and strategic initiatives.
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- Blog
- Información en español
- NFXF Shop
- Donate
- Fragile X Syndrome
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Featured
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- The Fragile X Premutation
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- Get Involved
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Christopher recieving a Special Olympics ribbon
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- Fragile X Syndrome
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Featured
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- The Fragile X Premutation
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- Get Involved
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Christopher recieving a Special Olympics ribbon
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View all events
2026 Webinar Series: FXTAS in FMR1 Premutation Carriers
November 19 @ 7:00 pm – 8:00 pm EST
Join us for Updates from Ongoing FXTAS Research, a webinar featuring researchers from the University of South Carolina, UC Davis MIND Institute, the University of Kansas, and the University of Maryland. Building on presentations from this summer’s NFXF International Fragile X Conference, the webinar will highlight ongoing research into Fragile X–associated tremor/ataxia syndrome (FXTAS), including the condition’s motor, cognitive, and emotional features.
Speakers will explore how FXTAS can vary across individuals, including differences in how symptoms emerge and progress with age, and share current research directions that are helping advance our understanding of FXTAS in women and men with an FMR1 premutation.
Panelists: Jessica Klusek, PhD, CCC-SLP, Matt Mosconi, PhD, David Hessl, PhD, Deborah Hall, MD, PhD, and Yash Kommula, PhD.
Date: November 19, 2026
Time: 7-8pm
View all events