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  • What is Fragile X

        • The Basics

        • Fragile X 101An overview of the Fragile X disorders caused by a mutation of the FMR1 gene.
        • Newly DiagnosedResources and advice to help navigate and understand your Fragile X diagnosis.

        • Fragile X Topics

        • Prevalence
        • Signs & Symptoms
        • Testing & Diagnosis
        • Genetics & Inheritance
        • Treatment Recommendations

        • 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
  • Fragile X Syndrome

        • The Basics

        • Fragile X SyndromeLearn more about Fragile X syndrome — also referred to as FXS — an inherited disorder affecting intellectual, behavioral, and social development in both males and females who have a full mutation of the FMR1 gene.

        • FXS Topics

        • Adulthood
        • Autism
        • Caregiving & Self Care
        • Daily Living Strategies
        • Females
        • Learning, School, and Education
        • Managing Behavior
        • Medication
        • Physical & Mental Health
        • Puberty & Sexuality
  • The Fragile X Premutation

        • The Basics

        • The Fragile X PremutationThe Fragile X premutation is one type of mutation within the Fragile X FMR1 gene. As many as 1.5 million people in the U.S. have the premutation, many unknowingly.
        • Reproductive ResourcesFamily planning resources include carrier screening, reproductive options, and associated costs.

        • 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.
        • Three adorable children.
  • Resources

        • Watch

        • Webinars and VideosOur popular videos and webinars presented by Fragile X experts and advocates.
        • Fragile X MasterClass™Online training for both professionals working with individuals with Fragile X and for family members and caregivers.

        • Read

        • Treatment RecommendationsIn-depth consensus documents developed by Fragile X professionals and experts.
        • Información en EspañolOur library of available information in Spanish.
        • NFXF E-Books & PDFsE-books and other notable printables.

        • Find a Provider

        • Fragile X Clinic FinderFragile X clinics provide specialized medical care and multidisciplinary services tailored to individuals with FXS and FXTAS. Easily locate U.S. clinics based on location, condition, and age. You can also find international clinics and support organizations listed by country.
        • FXS Clinics
        • FXTAS Clinics
        • International Clinics
  • Research

        • 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.

        • Learn more

        • Research News & ResultsCurated summaries of important Fragile X research studies.
        • NFXF Research ArticlesOriginal research articles and the final report from our FDA NFXF-led patient-focused drug development meeting.
        • Research 101The ultimate guide for understanding Fragile X research and treatment development.

        • 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.
  • Get Involved

        • 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 DonorsMeet some inspiring 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.
        • Ways to GiveOther ways you can make a contribution and support our mission.

        • Advocacy

        • Advocacy ProgramsYour participation moves the needle for important research funding and policies.
        • NFXF Advocacy DayShow up, tell your story, and educate Congress on the practical ways they can help 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.

        • Featured Event

        • NFXF Webinar Series: Resources and Support Around Grief and LossSEPT. 17 @ 8PM Join our expert panel for insights, strategies, and resources to help navigate grief in the context of Fragile X.
        • Learn More & Register
        • See All Webinars & Videos
        • Grief webinar panel of experts.
          Susan Aaron, Caitlin Arndt, CCLS, Arlen Gaines, PhD, MSW, LCSW-C, APHSW-C, and Margaret Gilbride, JD, CT
  • About NFXF

        • 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.

        • Our Team

        • NFXF StaffMeet the people behind the scenes at the National Fragile X Foundation.
        • NFXF Board of DirectorsMeet our board, ambassadors, and self-advocate advisors.
        • Advisory CommitteeMeet the esteemed group providing expert opinion and strategic oversight across NFXF programming.

        • Connect with Us

        • Subscribe to NFXF NewslettersLearn, stay up-to-date, and connect with our weekly updates.
        • Contact UsWe’d love to hear from you.
  • Blog
  • Información en español
  • NFXF Shop
  • Donate
  • What is Fragile X

        • The Basics

        • Fragile X 101An overview of the Fragile X disorders caused by a mutation of the FMR1 gene.
        • Newly DiagnosedResources and advice to help navigate and understand your Fragile X diagnosis.

        • Fragile X Topics

        • Prevalence
        • Signs & Symptoms
        • Testing & Diagnosis
        • Genetics & Inheritance
        • Treatment Recommendations

        • 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
  • Fragile X Syndrome

        • The Basics

        • Fragile X SyndromeLearn more about Fragile X syndrome — also referred to as FXS — an inherited disorder affecting intellectual, behavioral, and social development in both males and females who have a full mutation of the FMR1 gene.

        • FXS Topics

        • Adulthood
        • Autism
        • Caregiving & Self Care
        • Daily Living Strategies
        • Females
        • Learning, School, and Education
        • Managing Behavior
        • Medication
        • Physical & Mental Health
        • Puberty & Sexuality
  • The Fragile X Premutation

        • The Basics

        • The Fragile X PremutationThe Fragile X premutation is one type of mutation within the Fragile X FMR1 gene. As many as 1.5 million people in the U.S. have the premutation, many unknowingly.
        • Reproductive ResourcesFamily planning resources include carrier screening, reproductive options, and associated costs.

        • 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.
        • Three adorable children.
  • Resources

        • Watch

        • Webinars and VideosOur popular videos and webinars presented by Fragile X experts and advocates.
        • Fragile X MasterClass™Online training for both professionals working with individuals with Fragile X and for family members and caregivers.

        • Read

        • Treatment RecommendationsIn-depth consensus documents developed by Fragile X professionals and experts.
        • Información en EspañolOur library of available information in Spanish.
        • NFXF E-Books & PDFsE-books and other notable printables.

        • Find a Provider

        • Fragile X Clinic FinderFragile X clinics provide specialized medical care and multidisciplinary services tailored to individuals with FXS and FXTAS. Easily locate U.S. clinics based on location, condition, and age. You can also find international clinics and support organizations listed by country.
        • FXS Clinics
        • FXTAS Clinics
        • International Clinics
  • Research

        • 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.

        • Learn more

        • Research News & ResultsCurated summaries of important Fragile X research studies.
        • NFXF Research ArticlesOriginal research articles and the final report from our FDA NFXF-led patient-focused drug development meeting.
        • Research 101The ultimate guide for understanding Fragile X research and treatment development.

        • 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.
  • Get Involved

        • 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 DonorsMeet some inspiring 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.
        • Ways to GiveOther ways you can make a contribution and support our mission.

        • Advocacy

        • Advocacy ProgramsYour participation moves the needle for important research funding and policies.
        • NFXF Advocacy DayShow up, tell your story, and educate Congress on the practical ways they can help 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.

        • Featured Event

        • NFXF Webinar Series: Resources and Support Around Grief and LossSEPT. 17 @ 8PM Join our expert panel for insights, strategies, and resources to help navigate grief in the context of Fragile X.
        • Learn More & Register
        • See All Webinars & Videos
        • Grief webinar panel of experts.
          Susan Aaron, Caitlin Arndt, CCLS, Arlen Gaines, PhD, MSW, LCSW-C, APHSW-C, and Margaret Gilbride, JD, CT
  • About NFXF

        • 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.

        • Our Team

        • NFXF StaffMeet the people behind the scenes at the National Fragile X Foundation.
        • NFXF Board of DirectorsMeet our board, ambassadors, and self-advocate advisors.
        • Advisory CommitteeMeet the esteemed group providing expert opinion and strategic oversight across NFXF programming.

        • Connect with Us

        • Subscribe to NFXF NewslettersLearn, stay up-to-date, and connect with our weekly updates.
        • Contact UsWe’d love to hear from you.
  • Blog
  • Información en español
  • NFXF Shop
  • Donate

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Since 1984, the NFXF 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.
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