cover image: Fragile X Info: Your In-Person Visit to a Fragile X Clinic

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Fragile X Info: Your In-Person Visit to a Fragile X Clinic

17 Mar 2021

Fragile X Info: Your In-Person Visit to a Fragile X Clinic Fragile X Info: Your Visit to a Fragile X Clinic - An In-Person Visit Overview Fragile X is a group of conditions associated with changes in the Fragile X gene – called FMR1 and located on the X chromosome. [...] The Fragile X Clinical and Research Consortium (FXCRC) The Fragile X Clinical and Research Consortium (FXCRC) was created by The National Fragile X Foundation (NFXF) in response to the growing needs of families whose members have one of the Fragile X-associated Disorders (FXD). [...] For a regularly updated map and clinic information, see: Where to Begin Begin by calling the clinic coordinator to discuss your concerns about your child or family member and what you hope to get out of the visit. [...] Are referrals made to local providers in your area? After the evaluation, will the clinic director be available to review and discuss the results? Will each specialist be available, or will the clinic director review the findings of each specialist with you? When will a written evaluation be available? Will it consist of separate reports by each clinic specialist or one report? Can you request tha. [...] Will the doctor answer questions/converse by phone or email following the visit, even months later? How often should I expect to make an in-person visit? Will the doctor do telehealth visits? See: About the NFXF The National Fragile X Foundation (NFXF) was founded in 1984 to support individuals with Fragile X sy.

Authors

National Fragile X Foundation

Pages
2
Published in
United States of America