The NFXF Community Support Network

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Community is built into everything we do. Knowing there are others impacted by Fragile X out in the world and sharing your challenges and triumphs is incredibly empowering. We urge you to connect with others through the Community Support Network, as well as FacebookTwitter, and Instagram. The advice, personal stories, and friends you make will keep you strong, competent, and confident in dealing with all things Fragile X.

What is the Community Support Network?

Our community network is comprised of:

  1. NFXF Community Chapters
  2. Community Partners
  3. Community Contacts
  4. Sibling & Self-Advocate Network
Father, mother and daughter

Have you had a new Fragile X diagnosis in your family?

WEʼRE HERE TO HELP

NFXF Community Chapters

To find your local chapter, check out the interactive map below↓. Community chapters are officially affiliated with the NFXF in support of our mission to provide unwavering support for every family affected by Fragile X. Support includes providing educational and awareness opportunities, fundraising, and supporting the Fragile X Clinic & Research Consortium — 30+ Fragile X specialty clinics located across the U.S.  (If you’re seeking medical support related to Fragile X, please visit our Fragile X clinic map.)

Now’s the time to get involved. Your local chapter welcomes you to give back, pay it forward, learn, and have fun:

  • Attend social activities like picnics, bowling outings, and trips to museums.
  • Participate in local education seminars on topics like IEPs and behavioral challenges.
  • Participate in community events and find out how much fun it is to fundraise with others toward a common cause through walks, flower sales, pumpkin parades, and more.
  • Join in on support group meetings and get to know others who understand the issues you’re facing.
  • Educate and advocate with organized trips (and Zoom) to Washington D.C. for National Fragile X Foundation Advocacy Day.

If there isn’t a chapter in your area↓, we can help you start one. To let us know you’re interested — or to ask us anything about the CSN — please contact csn@fragilex.org

NFXF volunteers

Above: NFXF Community Support Network volunteers meet in 2019. Back row, far right is former Congressman Gregg Harper, a Fragile X father.

Community Partners

To find community partners near you, use our interactive map↓ below. Community partners are independent, tax-exempt organizations that collaborate with the NFXF to support the Fragile X community, raise awareness, and offer educational opportunities to families in their geographic area. These groups are primarily run by volunteer parents, and are not formally affiliated with the NFXF.

Community Contacts

To find community contacts near you, use our interactive map↓ below.

Community contacts are dedicated volunteers (individuals or groups) who are available to answer questions and provide educational and emotional support, especially to those with newly diagnosed children.

The Sibling & Self-Advocate Network

The NFXF offers opportunities for individuals and siblings of individuals living with Fragile X to connect. If you or one of your siblings is living with Fragile X and would like to join a group of like-minded individuals, the Sibling & Self-Advocate Network is for you! For more information, please contact: sibselfrl@fragilex.org.

Find Your Community Chapter, Partner or Contact

Below: All chapters and contacts are shown in the map and listed by name below the map by default.

Above the map (left) you can filter by Community Contact, Community Partner, or NFXF Chapter. You can also search by state (only states with a chapter, partner, or contact are listed). Below the map (right) there’s a search box where you can search for any keyword appearing in a listing. If you click on a listing below the map, it will show its location on the map. If you need any help, please let us know.

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