Healthcare Professionals: So that the newest generation of Fragile X professionals are as knowledgeable and passionate about Fragile X as the current one, we have created the Peer Support Network within the Fragile X Clinical & Research Consortium. It pairs established Fragile X professionals with new ones for improved communication within the FXCRC. We hope to make it easier and more comfortable for early-career professionals to reach out to their more established peers for advice and recommendations. More information coming soon, or you can send an email to Robby Miller at robby@fragilex.org.
Frequently Asked Questions
The FXCRC was founded in 2006 by the National Fragile X Foundation with 11 original clinic members. Since that time, it has continued to grow and now has over 30 sites in the U.S. In 2016, the FXCRC voted to create an International Membership category in response to growing worldwide interest in Fragile X treatment and research.
The FXCRC is overseen by the NFXF, with advice from affiliated clinicians, researchers, and parents as needed. The NFXF provides for the FXCRC’s communication capabilities, meeting organization, and other infrastructure needs.
The FXCRC’s goals are:
- Ensure that comprehensive evaluation and clinically appropriate treatment, or treatment recommendations, are available within a reasonable geographic distance for all families.
- Advance the pace of research, especially translational research, by engaging families from all member clinics.
All applications to join the FXCRC, as well as decisions affecting a clinic’s status, are reviewed and made by the NFXF. Requirements for FXCRC membership include the following team members:
- Director: Oversees all clinical services.
- Clinic Coordinator: Coordinates services and referrals. The Clinic Coordinator is the main contact for families being served by the clinic.
- Physician: Qualified in the treatment and clinical management of patients with Fragile X syndrome using current best practices. The physician is often also the director.
- Other: Other team members may have a repository of knowledge about Fragile X disorders, which is reflected not only in the services offered but also in information on clinical trials and other pertinent research activities.
The FXCRC forms various committees and workgroups as needed. All FXCRC member clinics are encouraged to participate to the best of their ability. Work is done through teleconference and email throughout the year, with in-person meetings typically held annually.
To learn more about the FXCRC, please contact Robert Miller, Director of Clinic & International Relations, at robby@fragilex.org.
Fragile X clinics provide medical services (including medication evaluations and consultations) under the supervision of a physician and supported by the latest medical, educational, and research knowledge. Multidisciplinary services, such as genetic counseling and occupational, speech, language, and behavioral therapies, are also available either at the clinic or by referral.
Each listing includes the ages treated at that clinic. All FXS clinics treat children and teens ages 0–18. Some clinics treat ages 0–21, and some treat all ages.
Please be aware that the NFXF works to ensure its clinic listing is current and accurate. However, to confirm the services provided and the ages seen at each site, be sure to ask when you first contact the clinic.
This label is provided for those who wish to join the FORWARD-MARCH study via a participating clinic.
If you have questions about the study, please contact Amie Milunovich at amie@fragilex.org.
The Fly with Me Fund provides financial assistance to eligible families for travel to a Fragile X member clinic. Learn more
If you have any questions or need assistance, please connect with us. (We really do read all of them.)