FXTAS Clinics

FXTAS Clinics 2019-06-27T08:58:21+00:00

FXTAS Clinics

Clinics Specializing in the Treatment of Fragile X-Associated Tremor/Ataxia Syndrome

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. While there is currently no cure for FXTAS, specialists may be able to lessen the severity and/or 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.

U.S. FXTAS Treatment and Research Clinics

The following institutions are members of the NFXF’s International FXTAS Consortium (IFC). Clinics with an asterisk (*) following their name have been recommended for IFC membership by existing IFC members and their application is in-process.

Aurora, Colorado, USA

UC Health
UCHealth Neurology Outpatient Clinic

1635 Aurora Court Anschutz Outpatient Pavilion,
4th Floor
Aurora, CO 80045

Visit Online
UC Health »
UCHealth Neurology Outpatient Clinic »

Contact
phone(720) 848-2080
fax(720) 848-2106
@ying.3.liu@ucdenver.edu

Medical Director
Maureen Leehey, MD

Clinical Coordinator
Alan Hall

Chicago, Illinois, USA

Rush University
Rush University FXTAS Clinic

1725 West Harrison, Suite 755
Chicago, IL 60612

Visit Online
Rush University »
Rush University FXTAS Clinic »

Contact
phone(312) 563-2900
fax(312) 563-2124
@kimberly.parsa@rush.edu

Medical Director
Deborah Hall, MD, PhD »

Clinical Coordinator
Kimberly Parsa

Ann Arbor, Michigan, USA

University of Michigan
University of Michigan Fragile X Clinic

4260 Plymouth Road
Ann Arbor, MI 48109

Visit Online
University of Michigan »
University of Michigan Fragile X Clinic »

Contact
phone(734) 764-6831
@petertod@umich.edu
@jjacher@med.umich.edu

Medical Director
Peter K. Todd, MD, PhD

Clinical Coordinator
Joe Jacher

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
phone(212) 241-6947
fax(212) 241-6947
@christi.flores@mssm.edu

Medical Director
Reymundo Lozano MS, MD

Clinical Coordinator
Christy Flores

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, it is important that patients confirm the details of their participation with the researchers.

Sacramento, California, USA

UC Davis MIND Institute
Fragile X Research and Treatment Center

2823 50th Street
Sacramento, CA 95817

Visit Online
UC Davis MIND Institute »
Fragile X Research and Treatment Center »
Genotype-Phenotype Relationships in Fragile X Families »
We are recruiting males and females with the premutation (ages 55-85 years) who are having symptoms of FXTAS.

Contact
phone(916) 703-0472
@yamclennan@ucdavis.edu

Medical Director
Randi Hagerman, MD

Clinic Coordinator
Bella McLennan

Atlanta, Georgia, USA

Emory University School of Medicine, Dept. of Human Genetics
National Fragile X Center at Emory

1462 Clifton Road, Suite 300
Atlanta, GA 30322

Visit Online
Emory University School of Medicine, Dept. of Human Genetics »
National Fragile X Center at Emory »
Modifiers of FXTAS in Individuals with the Premutation »
We are now enrolling participants in our study called “Modifiers of Fragile X-Associated Disorders” (FX-MOD) study.

Contact
phone(404) 778-8478
@lshubec@emory.edu

Center Director
Stephen T. Warren, PhD

Clinic Coordinator
Lisa Shubec

International Treatment and Research Clinics

Please be aware that clinics outside of the U.S. operate under different rules, regulations, and cultural norms, and services may be provided differently than they are 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

Caufield Hospital
Cerebellar Ataxia Clinic

Main Block (Building 28), Level 1,
260 Kooyong Rd.
Caulfield VIC 3162

Visit Online
Caufield Hospital »
Cerebellar Ataxia Clinic »

Contact
phone011 61 3 9076 6800
fax011 61 3 9076 6435
@dsz@me.com

Head of Service
Dr. David Szmulewicz

Clinic Coordinator
Suhanya Dassanayake

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
phone011 86 134 8758 0604
fax011 86 731 8515 1092
@cn-fxtas@tom.com

Medical Director
Xianlai Duan, MD

Clinic Coordinator
Lihua Liu

Cali, Colombia

Hospital Universitario del Valle
Genetica y Dismorfologia

Cl. 5 #36-08
Cali, Valle del Cauca

Visit Online
Hospital Universitario del Valle »

Contact
phone011 57 057 3182800698
@wilmar.saldarriaga@correounivalle.edu.co

Medical Director
Wilmar Saldarriaga, MD

Clinic Coordinator
Julian Ramirez Cheyne

Semarang, Indonesia*

Diponegoro University

Visit Online
Diponegoro University »

Contact
@sultana@fk.undip.ac.id

Medical Director
Sultana MH Faradz, MD, PhD

Huddinge, Sweden*

Karolinska University Hospital
Genetica y Dismorfologia

Department of Neurology
14186 Huddinge, Sweden

Visit Online
Hospital Universitario del Valle »

Contact
phone011 46 585 800 00
fax011 46 585 800 00
@per.svenningsson@ki.se

Medical Director
Dr. Magnus Andersson

Clinic Coordinator
Per Svenningsson

Liverpool, United Kingdom

The Walton Centre NHS Foundation Trust
Management of Movement Disorders

Lower Lane, Fazakerley
Liverpool L9 7LJ

Visit Online
The Walton Centre NHS Foundation Trust »
Management of Movement Disorders »

Contact
phone011 44 151 556 3534
@sundus.alusi@thewaltoncentre.nhs.uk

Medical Director
Dr. Andrew Nicholson

Clinical Coordinator
Dr. Sundus Alusi