The Fragile X Clinical & Research Consortium

History

The Fragile X Clinical and Research Consortium (FXCRC) was created in 2006 by the National Fragile X Foundation in response to the growing needs of families whose members have one of the three identified Fragile X conditions — Fragile X syndrome (FXS), Fragile X-associated primary ovarian insufficiency (FXPOI), and Fragile X-associated tremor/ataxia syndrome (FXTAS).

The FXCRC heads both the clinics and support groups, and in 2011 began drafting the Fragile X treatment and intervention recommendations, also known as consensus documents.

Be a part of the solution.

Learn more about the INTERNATIONAL FRAGILE X PREMUTATION REGISTRY and join individuals with the premutation and their families to help advance — and encourage — deeper understanding and research into the premutation condition.

LEARN MORE
International Fragile X Premutation Registry
International Fragile X Premutation Registry

Be a part of the solution.

Learn more about the International Fragile X Premutation Registry and join individuals with the premutation and their families to help advance — and encourage — deeper understanding and research into the premutation condition.

LEARN MORE

Fragile X Clinics

Fragile X clinics provide medical services (including medication evaluation and consultation) supervised by a physician and supported by the latest medical, educational, and research knowledge available. Multidisciplinary services, such as genetic counseling and occupational, speech, language, and behavioral therapies, are also available either at the clinic or by referral.

Many of the clinics also participate in collaborative research efforts with other Fragile X clinics and professionals. Besides serving families closer to where they live, these clinics also benefit the Fragile X community by sharing knowledge, research, and clinical experiences with one another. This in turn helps the patients whom they serve.

We recommend visiting a Fragile X clinic if you’ve never been to one (or it’s been a while), if you would like more information about Fragile X and your child, if you are having issues with therapies, behavior, or school, or if you’re interested in joining FORWARD — a registry and a clinical database that allows specialty clinics across the U.S. to work together and gather important information about people of all ages with FXS. Some clinics also have active research studies or clinical trials.

More Resources

Why You Should Visit a FX Clinic
Learn more about the benefits of visiting a Fragile X clinic.

Planning Your Fragile X Clinic Visit
Learn more about preparing for your visit, including checklists to keep you on track.

What Does a Fragile X Clinic Mean for You?
Why a Fragile X clinic might be exactly what you were looking for.

Fly With Me Fund
Financial assistance for families to travel to a Fragile X member clinic of the FXCRC.

Clinic Evaluation Survey

Have you visited an FXCRC Fragile X clinic in 2019 or 2020 — either in-person or virtually?

Clinical Trials From Start to Finish
Information and FAQs about clinical trials.

Find a Fragile X Clinic

In addition to the clinics listed in the U.S. map below, the following are also available:

International Family Support & Clinics
Since 1984 the Fragile X Clinical & Research Consortium has taken the lead in fostering worldwide Fragile X communication. Beginning in 2010 we added international affiliates (parent support and clinics).

FXTAS Clinics
FXTAS clinics are comprised of doctors (primarily neurologists and movement disorder specialists), therapists, researchers, and other specialists who treat FXTAS by utilizing the best available scientific knowledge about the known causes of FXTAS.

map legend

The markers on the U.S. map below all indicate a clinic, including those participating in the FORWARD Registry & Database.

Fragile X Clinic

Fragile X Clinic + Participates in FORWARD Registry & Database

Filter by
StateTitleDescriptionLink

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

Last Updated: 1/6/2021