FXTAS Clinics | NFXF (original) (raw)
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- Fragile X 101
* Fragile X 101
* Prevalence
* Signs & Symptoms
* Genetics and Inheritance
* Testing and Diagnosis - Fragile X Syndrome
* Fragile X Syndrome
* Fragile X & Autism - Associated Conditions
* Premutation
* FXPOI
* FXTAS
* New Developments - Xtraordinary Individuals
- 31 Shareable Fragile X Facts
- Fragile X Info Series
- FRAGILE X MASTERCLASS
- Knowledge Center
- Fragile X 101
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- Resources for Families
- FXS Strategies by Topic
* Adulthood
* Autism
* Behavior
* Daily Living
* Females
* Medications
* Physical & Medical Concerns
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- Premutation Topics
* The Fragile X Premutation
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* Research 101: What is Research?
* STX209 Reconsent Project
* International Fragile X Premutation Registry — For Participants
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* Original Research Articles
* FORWARD-MARCH
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- Find a Contact Near Your
- Knowledge Center
- Webinars & Videos
- Printable Resources
- Treatment Recommendations
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- Resources for Professionals
- NFXF MasterClass™️ for Professionals
- Research Readiness Program
- NFXF Data Repository
- International Fragile X Premutation Registry — Research Requests
- FORWARD-MARCH Registry & Database
- NFXF-Led Patient-Focused Drug Development Meeting
- Marketing Your Research Opportunities
- Treatment Recommendations
- Find a Clinic Near You
- NFXF Research Awards
* Randi J. Hagerman Summer Scholars
* Junior Investigator Awards
FXTAS Clinics
FXTAS ClinicsDan Whiting2024-10-21T16:21:53-04:00
FXTAS Clinics
Clinics Specializing in the Treatment of Fragile X-Associated Tremor/Ataxia Syndrome
FXTAS clinics comprise 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. While there is currently no cure for FXTAS, specialists may be able to lessen the severity and slow the progression of symptoms.
Contacting a Clinic: Please feel free to contact the clinic directly or contact us here at the National Fragile X Foundation for guidance on choosing the most appropriate clinic for your needs.
Also see: U.S. Fragile X Syndrome Clinics | International Clinics
U.S. FXTAS Treatment and Research Clinics
The following institutions are NFXF International FXTAS Consortium (IFC) members.
ATLANTA, GEORGIA, USA
Emory University School of Medicine, Dept. of Human Genetics
Stephen T. Warren National Fragile X Center at Emory
1462 Clifton Road, Suite 300
Atlanta, GA 30322
Visit Online
National Fragile X Center at Emory »
Contact
p (404) 778-8478
e lisa.shubeck@emory.edu
Medical Director
Laura Scorr, MD
Clinic Coordinator
Lisa Shubeck
NEW YORK, NEW YORK, USA
Icahn School of Medicine at Mount Sinai
Fragile X Spectrum Disorder Clinic
1428 Madison Ave.
Atran Building, 1st Floor
New York, NY 10029
Visit Online
Mount Sinai »
Fragile X Spectrum Disorder Clinic »
Contact
p (212) 241-6947
f (212) 241-6947
e christi.flores@mssm.edu
Medical Director
Reymundo Lozano MS, MD
Clinical Coordinator
Christy Flores
BOCA RATON, MIAMI, FLORIDA, USA
University of Miami
Miller School of Medicine
1489 West Palmetto Park Rd
Suite 400
Boca Raton, FL 33486
1150 NW 14th Street
Suite 609
Miami, FL 33136
Visit Online
U Miami Health »
Contact
Roxanna Bustamante
p (305)243-3100
e Rbustamante@med.miami.edu
Clinical Coordinator Silvia Vargas Parra, CRC
Medical Director Henry Moore, MD
Medical Co-Director Matthew Chan Feldman, MD
Genetic Counselor Rena Pressman, GCG
Research-Only Clinics
Clinics designated as research-only exist exclusively to study potential interventions for FXTAS and patients are only accepted if they meet specific research criteria. While research patients may receive treatment as part of their participation in a research project, patients must confirm the details of participating with the researchers.
International Treatment and Research Clinics
Please be aware that clinics outside the U.S. operate under different rules, regulations, and cultural norms, and services may be provided differently than in the U.S. However, the IFC’s Task Force has ensured that each of the member clinics meets the IFC’s minimum standard of having available medical and medication evaluation, prescribing, monitoring, and genetic counseling.
CAUFIELD, AUSTRALIA
Balance Disorders and Ataxia Clinic
Royal Victorian Eye and Ear Hospital
32 Gisborne Street
Level 1, Blue Wing
East Melbourne
VIC 3002 Australia
Contact
p +613 9929 8270
e Clinic.E@eyeandear.org.au
Head of Service
Dr. David Szmulewicz
CHANGSHA, CHINA*
The Third Hospital of Changsha
International Clinic of FXTAS and Functional Neurology of Changsha
176 Lao-dong-xi Road
Changsha, P.R. China
Visit Online
The Third Hospital of Changsha »
Contact
p 011 86 134 8758 0604
f 011 86 731 8515 1092
e cn-fxtas@tom.com
Medical Director
Xianlai Duan, MD
Clinic Coordinator
Lihua Liu