NFXF Community Support Network | NFXF (original) (raw)

NFXF Community Support Network

NFXF Community Support NetworkDany Petraska2023-09-27T11:44:10-04:00

The NFXF Community Support Network

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 Facebook, Twitter, and Instagram. The advice, personal stories, and friends you make will keep you strong, competent, and confident in dealing with all things Fragile X. Our community network is comprised of four categories of support, which are all available in our search tool.

NFXF Chapters

NFXF 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 Fragile X Clinics.) If you’re interested in starting your own chapter — or to ask us anything about the CSN — please contact csn@fragilex.org

Community Partners

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

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.

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 or visit the SSAN Facebook page.

Also see our Info Series on the sibling relationship. Developmental disabilities in one sibling can present unique challenges for unaffected siblings. Just as with other disabilities, siblings of children with Fragile X syndrome may feel torn between two sets of feelings.

Find Support Near You

Search by your location to find the nearest community chapter, partner, or contact. You can also choose by state, but keep in mind that many chapters cover multiple states. They will be sorted from nearest to farthest.

Questions?

If you have questions we’d love to hear from you! If this is urgent, you may also call us, otherwise we will reply by email as soon as possible.

Email or call