Fragile X Clinic Finder

The Fragile X Clinic Finder tool lists U.S. clinics for Fragile X syndrome and FXTAS. For clinics and support organizations outside of the U.S., see our International Clinics. If you have questions or want to share your comments (all feedback is welcome), we’d love to hear from you!

Jump to the Clinic Finder

The Fragile X Clinical & Research Consortium (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 due to the growing worldwide interest in Fragile X treatment and research.

The FXCRC’s goals are:

  • To ensure that comprehensive evaluation and clinically appropriate treatment, or treatment recommendations, are available within a reasonable geographic distance for all families.
  • To advance the pace of research, especially translational research, by engaging families from all member clinics.

The FXCRC is overseen by the NFXF with advisement from affiliated clinicians, researchers and parents, as needed. The NFXF provides for the communication capabilities, meeting organization and other infrastructure needs of the FXCRC.

All applications to join the FXCRC, or decisions affecting the status of a clinic, are reviewed and made by the NFXF.

Requirements for FXCRC membership include:

  • Director who oversees all clinical services.
  • Clinic Coordinator who coordinates services and referrals and who is the main contact for families being served by the Clinic.
  • Physician (often the Director) who is qualified in the treatment and clinical management of patients with fragile X syndrome and who utilizes current best practices.
  • Other team members who are willing to develop a repository of knowledge about Fragile X disorders. This knowledge will not only be reflected in offered services, but also in information about 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) 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.

The NFXF works closely with the National Ataxia Foundation (NAF) to identify clinics that specialize in ataxia – a neurological condition characterized by the loss of muscle coordination, primarily affecting balance and movement. The listed NAF sites, while not specializing in FXTAS, have indicated that they have experience treating FXTAS patients. The NFXF has provided them with FXTAS and general Fragile X related materials. Families may find the NAF clinics helpful for their ataxia related problems.
NAF ataxia sites on the FXTAS clinic finder will have a note that they are an Ataxia Center of Excellence.

Each listing includes the ages treated at that location. All FXS clinics treat children and teens ages 0–18. Some clinics treat ages 0–21. Some treat all ages. FXTAS clinics treat all ages.

This label is provided for those who wish to join the FORWARD-MARCH study via a participating clinic.

The Fly with Me Fund offers financial assistance for eligible families to travel to a Fragile X member clinic. Learn more.

Find a Clinic Near You

Or choose by
Results:
Print

NFXF Clinic Results

FXS
Ages 0-18
Ages 19-21
Ages 22+

Atlantic Health System at Morristown Medical Center

Fragile X Center

100 Madison Avenue
Suite 201
Morristown, New Jersey, 07960
United States
Phone: 973-971-7634
Member of the Fragile X Clinical & Research Consortium

Team

Darius J. Adams, MD
Medical Director
Robin Godshalk, MS, MHA, LGC, CGC
Clinic Coordinator
FXS
Ages 0-18
Ages 19-21
FORWARD participant

Boston Children’s Hospital

Fragile X Program

2 Brookline Place
4th Floor
Brookline, Massachusetts, 02445
United States
Phone: 617-355-7025
Member of the Fragile X Clinical & Research Consortium

Team

Lisa Prock, MD, MPH
Research Director
Jonathan Picker, MBChB, PhD
Clinical Director
FXS
Ages 0-18

Children’s Health & UT Southwestern Medical School

Center for Autism Care and Developmental Disabilities

1341 W. Mockingbird Lane
Suite 240W
Dallas, Texas, 75235
United States
Phone: 214-456-7700
Member of the Fragile X Clinical & Research Consortium

Team

Patricia Evans, MD, PhD, FAAN, FAAP
Medical Director
Mary Ann Morris, PhD
Clinic Coordinator
FXS
Ages 0-18
Ages 22+
Ages 19-21
FORWARD participant

Children’s Hospital Colorado

Fragile X Clinic at Children’s Hospital Colorado

13123 East 16th Avenue
Suite B140
Aurora, Colorado, 80045
United States

In conjunction with Tracy Stackhouse, MA, OTR, Developmental Fragile X Center

Phone: 720-777-8361
Member of the Fragile X Clinical & Research Consortium
Read the NFXF Clinic Spotlight

Team

Nicole Tartaglia, MD
Medical Director
Susan Howell, MS, MBA, CGC
Clinic Coordinator
FXS
Ages 0-18
Ages 19-21

Childrenʼs Hospital New Orleans

Fragile X Clinic

210 State Street
New Orleans, Louisiana, 70118
United States
Phone: 504-896-7272
Member of the Fragile X Clinical & Research Consortium

Team

Susan Fielkow, MD
Clinic Director & Coordinator
FXS
Ages 0-18

Children's Hospital of Philadelphia

Specialty Care Center

3550 Market Street
3rd Floor
Philadelphia, Pennsylvania, 19104
United States
Phone: 215-590-7764
Member of the Fragile X Clinical & Research Consortium
Read the NFXF Clinic Spotlight

Team

Amanda Bennett, MD, MPH
Medical Director
Carmen Thomas
Program Coordinator
FXS
Ages 0-18
Ages 19-21
Ages 22+
FORWARD participant

Children’s National Health System

Children’s National Fragile X Clinic

6883 4th Street NW
Washington, DC, 20012
United States
Phone: 202-476-6249
Member of the Fragile X Clinical & Research Consortium

Team

Sinan Omer Turnacioglu, MD
Medical Director
Naterra D. Walker, NP
Nurse Practitioner
Srika Amin, MMSc, CGC
Clinic Coordinator
FXS
Ages 0-18
Ages 22+
Ages 19-21
FORWARD participant

Cincinnati Children’s Hospital Medical Center

Cincinnati Fragile X Research and Treatment Center

3333 Burnet Avenue
Cincinnati, Ohio, 45229
United States
Phone: 513-803-1150
Member of the Fragile X Clinical & Research Consortium
Read the NFXF Clinic Spotlight

Team

Craig Erickson, MD
Medical Director
Karen Manter
Clinic Coordinator
FXS
Ages 0-18

Duke University Medical Center

Child Development Program, Lenox Baker Children’s Hospital

3000 Erwin Road
Durham, North Carolina, 27705
United States
Phone: 919-668-0477
Member of the Fragile X Clinical & Research Consortium

Team

Alice Bryn Salter, MD
Medical Director
Alicia Russell
Clinic Coordinator
FXS
Ages 0-18
Ages 19-21
FORWARD participant

Emory University School of Medicine

Fragile X Syndrome Clinic, Department of Human Genetics

1365 Clifton Road
NE, TEC Building B, Suite 2200
Atlanta, Georgia, 30322
United States
Phone: 404-778-8570
Member of the Fragile X Clinical & Research Consortium

Team

Amy Tallboy, MD, FAAP
Medical Director
Jean Luan McColl, MS, CCRC
Clinical Research Coordinator
Hailey Dennis, MMSc, CGC
Licensed, Certified Genetic Counselor
FXTAS
Ages 0-18
Ages 22+
Ages 19-21

Emory University School of Medicine, Dept. of Human Genetics

Stephen T. Warren National Fragile X Center at Emory

1462 Clifton Road
Suite 300
Atlanta, Georgia, 30322
United States
Phone: 404-778-8478
Member of the International FXTAS Consortium

Team

Laura Scorr, MD
Medical Director
Krista Charen, MPH
Clinic Coordinator
FXS
Ages 0-18
Ages 19-21
Ages 22+
FORWARD participant

Fragile X Spectrum Disorder Clinic at Mount Sinai

Fragile X Spectrum Disorder Clinic

1428 Madison Avenue
Atran Building, 1st Floor
New York, New York, 10029
United States

Mailing Address: One Gustave L. Levy Place, Box 1497, New York, NY 10029

Phone: 212-241-4709
Member of the Fragile X Clinical & Research Consortium

Team

Mafalda Barbosa, MD, PhD
Medical Director
Ashley Daniels
Clinic Coordinator
Erika Levine
Genetic Counselor
FXS
Ages 0-18
Ages 22+
Ages 19-21
FORWARD participant

Geisinger Department of Developmental Medicine

Geisinger Fragile X Center

120 Hamm Drive
Suite 2A
Lewisburg, Pennsylvania, 17837
United States
Phone: 570-551-0559
Member of the Fragile X Clinical & Research Consortium

Team

Thomas H. Challman, MD
Medical Director
Barbara Haas-Givler, MEd, BCBA
Clinic Director
Makenzie Woltz
Clinic Coordinator
Phone: 570-551-0559
FXS
Ages 0-18
Ages 19-21
Ages 22+
FORWARD participant

Greenwood Genetic Center

Fragile X Syndrome Clinic, Greenville Office

14 Edgewood Drive
Greenville, South Carolina, 29605
United States
Phone: 864-250-7944
Member of the Fragile X Clinical & Research Consortium

Team

Carrie Buchanan, MD
Clinic Director
Nicole Johnston
Clinic Coordinator
FXTAS
Ages 0-18
Ages 19-21
Ages 22+

Icahn School of Medicine at Mount Sinai

Fragile X Spectrum Disorder Clinic

1428 Madison Avenue
Atran Building, 1st Floor
New York, New York, 10029
United States
Phone: 212-241-6947
Member of the International FXTAS Consortium

Team

Reymundo Lozano, MD, MS
Medical Director
Christy Flores
Clinic Coordinator
FXS
Ages 0-18
Ages 22+
Ages 19-21
FORWARD participant

Kennedy Krieger Institute

FMR1 and Related Conditions Clinic

801 N. Broadway
Baltimore, Maryland, 21205
United States
Phone: 443-923-7619
Member of the Fragile X Clinical & Research Consortium
Read the NFXF Clinic Spotlight

Team

Constance Smith-Hicks, MD, PhD
Co-Director
Wilfreda Lindsey, MD, MS
Co-Director
Angela Tanner
Clinic Coordinator
FXTAS
Ages 22+

Massachusetts General Hospital

Department of Neurology, P+A+MSA Clinic


Boston, Massachusetts,
United States

NAF Ataxia Center of Excellence

Phone: 855-278-8009

Team

Jeremy D. Schmahmann, MD
FXS
Ages 0-18
Ages 19-21
Ages 22+
FORWARD participant

MemorialCare Miller Children’s & Women’s Hospital Long Beach

Stramski Children’s Developmental Center

2651 Elm Avenue #205
Long Beach, California, 90806
United States
Phone: 562-728-5236
Member of the Fragile X Clinical & Research Consortium

Team

Gary S. Feldman, MD
Medical Director
Carla Calderon, FNP-BC
Clinic Coordinator
FXS
Ages 0-18
Ages 19-21
Ages 22+

MetroHealth Medical Center

MetroHealth Fragile X Clinic

7800 Pearl Road
Middleburg Heights, Ohio, 44130
United States
Phone: 216-778-4487
Member of the Fragile X Clinical & Research Consortium

Team

Charron Lewis, MD
Medical Director
Claudia Santos
Clinic Coordinator
FXTAS
Ages 22+

Northwestern Medicine

Department of Neurology, Feinberg School of Medicine


Chicago, Illinois,
United States

NAF Ataxia Center of Excellence

Phone: 312-695-7950

Team

Rizwan S. Akhtar, MD, PhD
FXS
Ages 0-18

Norton Children’s Developmental Center and Norton Children’s Genetics Center

The Norton Center Fragile X Clinic

411 East Chestnut Street
Level 2
Louisville, Kentucky, 40202
United States

When calling the main phone line, ask for ext. 50174.

Phone: 502-588-0850
Member of the Fragile X Clinical & Research Consortium

Team

Joseph Hersh, MD
Medical Director
Jeanie Hammond, LCSW
Clinic Coordinator
FXS
Ages 0-18
Ages 19-21
Ages 22+
FORWARD participant

NYS Institute for Basic Research in Developmental Disabilities

George A Jervis Clinic

1050 Forest Hill Road
Staten Island, New York, 10314
United States
Phone: 718-494-5151
Member of the Fragile X Clinical & Research Consortium
FXS
Ages 0-18
FORWARD participant

Phoenix Children’s Hospital

Fragile X Clinic

1919 E. Thomas Road
Phoenix, Arizona, 85016
United States
Phone: 602-933-2327
Member of the Fragile X Clinical & Research Consortium
Read the NFXF Clinic Spotlight

Team

Dannah Raz, MD
Medical Director
Jenny Swanson
Clinic Coordinator
FXS
Ages 0-18
Ages 19-21
FORWARD participant

Rady Children’s Health

Fragile X Program, Thompson Autism and Neurodevelopmental Center

170 South Main Street
Orange, California, 92868
United States

Note: Rady Children’s Health was formerly the Children’s Hospital of Orange County.

Phone: 714-288-7679
Member of the Fragile X Clinical & Research Consortium
Read the NFXF Clinic Spotlight

Team

Sailaja Golla, MD
Fragile X Clinic Director
Debbie Bunch
Clinic Coordinator
FXS
Ages 0-18
Ages 19-21
Ages 22+
FORWARD participant

Rush University Medical Center

Fragile X Clinic and Research Program, Fragile X-Associated Disorders Program

1725 West Harrison Street
Suite 718
Chicago, Illinois, 60612
United States
Phone: 312-563-4937
Member of the Fragile X Clinical & Research Consortium
Read the NFXF Clinic Spotlight

Team

Elizabeth Berry-Kravis, MD, PhD
Medical Director
Milica Milic
Clinic Coordinator
Angel Wang
Clinic Research Coordinator
Stella Boekman
Clinic Research Coordinator
FXTAS
Ages 0-18
Ages 19-21
Ages 22+

Rush University Medical Center

Rush University FXTAS Clinic

1725 West Harrison
Suite 755
Chicago, Illinois, 60612
United States
Phone: 312-563-2900
Member of the International FXTAS Consortium

Team

Deborah Hall, MD, PhD
Medical Director
FXS
Ages 0-18
Ages 19-21
Ages 22+
FORWARD participant

Rutgers Robert Wood Johnson Medical School

Child Health Institute of New Jersey, Division of Pediatric Medical Genetics

89 French Street
New Brunswick, New Jersey, 08901
United States
Phone: 732-235-6350
Member of the Fragile X Clinical & Research Consortium

Team

Milen Velinov, MD, PhD
Medical Director
Felicia Balsamo
Clinic Coordinator
FXS
Ages 0-18
Ages 19-21
Ages 22+

Stanford Medicine Children’s Health

Behavioral Neurogenetics Clinic

730 Welch Road
Palo Alto, California, 94304
United States
Phone: 650-498-4538
Member of the Fragile X Clinical & Research Consortium
Read the NFXF Clinic Spotlight

Team

Allan Reiss, MD
Medical Director
Lucia Gutierrez
Clinic Coordinator
FXS
Ages 0-18
FORWARD participant

Texas Children’s Hospital and Baylor College of Medicine

Fragile X Clinic, The Meyer Center for Developmental Pediatrics and Autism

8080 N. Stadium Drive
Houston, Texas, 77054
United States
Phone: 832-822-3420
Member of the Fragile X Clinical & Research Consortium
Read the NFXF Clinic Spotlight

Team

Holly K. Harris, MD
Clinic Chief and Developmental-Behavioral Pediatrics Specialist
Diane Treadwell-Deering, MD
Developmental Pediatrician
Dinah Godwin, LCSW-S
Social Worker
FXTAS
Ages 22+

UAB Medicine

Department of Neurology, Division of Movement Disorders


Birmingham, Alabama,
United States

NAF Ataxia Center of Excellence

Phone: 205-801-8986*

Team

Marissa Dean, MD

Note: *Call The Kirklin Clinic for appointments

FXS
Ages 0-18
Ages 19-21
Ages 22+
FORWARD participant

UC Davis Health System

Fragile X Research and Treatment Center, UC Davis MIND Institute

2825 50th Street
Sacramento, California, 95817
United States

*Physician’s Referral: 1-800-482-3284

Phone: 916-703-0300*
Member of the Fragile X Clinical & Research Consortium
Read the NFXF Clinic Spotlight

Team

Randi Hagerman, MD
Medical Director
FXTAS
Ages 0-18
Ages 19-21
Ages 22+

UC Davis Health System

Genotype-Phenotype Relationships in Fragile X Families, Fragile X Research and Treatment Center

2825 50th Street
Sacramento, California, 95817
United States
Phone: 916-703-0200
Member of the International FXTAS Consortium
Read the NFXF Clinic Spotlight

Team

Randi Hagerman, MD
Medical Director

Note: Research-Only Clinic: Patients need to meet specific research criteria for clinics designated as research-only. We are recruiting males and females with the premutation (ages 55-85 years) who have symptoms of FXTAS.

FXTAS
Ages 0-18
Ages 22+
Ages 19-21

UC Health

UCHealth Neuroscience Center

1635 Aurora Court Anschutz Outpatient
Aurora, Colorado, 80045
United States
Phone: 720-848-2080
Member of the International FXTAS Consortium

Team

Emily Forbes, DO
Medical Director
Marrisa LaFreniere, CGC
Clinic Coordinator
FXS
Ages 0-18
Ages 19-21

University of Iowa Stead Family Children’s Hospital

Center for Disabilities and Development

200 Hawkins Drive
Iowa City, Iowa, 52242
United States
Phone: 319-356-7044
Member of the Fragile X Clinical & Research Consortium

Team

Dianne McBrien, MD
Medical Director

Note: For referral to adult care, phone 319-353-6900 and ask for Stephanie Bagley.

FXS
Ages 0-18
Ages 19-21

University of Kansas Medical Center

Center for Child Health & Development, Division of Developmental and Behavioral Pediatrics

3901 Rainbow Boulevard
Mail Stop 4003
Kansas City, Kansas, 66160
United States
Phone: 913-588-5741
Member of the Fragile X Clinical & Research Consortium

Team

Michael Slogic, MD
Director
Stephanie Coleman
Clinic Coordinator
FXTAS
Ages 22+

University of Kansas Medical Center

Department of Neurology, Landon Center on Aging


Kansas City, Kansas,
United States

NAF Ataxia Center of Excellence

Phone: 913-588-6820

Team

Richard Dubinsky, MD
FXS
Ages 0-18
Ages 19-21
Ages 22+
FORWARD participant

University of Massachusetts Medical School & Memorial Health Care

Center for Autism and Neurodevelopmental Disorders

100 Century Drive
Worcester, Massachusetts, 01606
United States
Phone: 774-442-2263
Member of the Fragile X Clinical & Research Consortium

Team

Isha Jalnapurkar, MD
Medical Director
Elizabeth Turenne
Clinic Coordinator
FXTAS
Ages 0-18
Ages 19-21
Ages 22+

University of Miami

Miller School of Medicine

1489 West Palmetto Park Road
Suite 400
Boca Raton, Florida, 33486
United States

NAF Ataxia Center of Excellence

Phone: 305-243-3100
Member of the International FXTAS Consortium

Team

Henry Moore, MD
Medical Director
Matthew Chan Feldman, MD
Medical Co-Director
Rena Pressman, GCG
Genetic Counselor

Note: ** Clinic locations in both Miami and Boca Raton

FXS
Ages 0-18
Ages 22+
Ages 19-21
FORWARD participant

University of Miami Miller School of Medicine

South Florida Fragile X Clinic, Mailman Center for Child Development

1601 NW 12th Avenue
Miami, Florida, 33136
United States

Mailing Address: 1051 NW 10th Avenue, BRB-336 (M-860), Miami, Florida 33136

Phone: 305-243-5432
Member of the Fragile X Clinical & Research Consortium
Read the NFXF Clinic Spotlight

Team

Deborah Barbouth, MD
Medical Director
Rena Pressman, MS
Genetic Counselor & Clinic Coordinator
FXTAS
Ages 0-18
Ages 19-21
Ages 22+

University of Michigan

The University of Michigan Fragile X Clinic

4260 Plymouth Road
Ann Arbor, Michigan, 48109
United States
Phone: 734-764-6831
Member of the International FXTAS Consortium

Team

Peter K. Todd, MD, PhD
Medical Director
Jessica O’Shea, MS, LCGC
Clinic Coordinator
FXS
Ages 0-18
Ages 19-21
Ages 22+

University of Michigan Hospital

Fragile X Syndrome Clinic, Division of Pediatric Genetics

1540 E. Hospital Drive
Reception C, Level 6
Ann Arbor, Michigan, 48109
United States
Phone: 734-764-0579
Member of the Fragile X Clinical & Research Consortium
Read the NFXF Clinic Spotlight

Team

Christina Sloan-Heggen, MD, PhD
Medical Director
Peter Todd, MD, PhD
Lauren O’Connell, MD
Jessica O’Shea, MS, LCGC
Clinic Coordinator

Note: The phone number listed is the Pediatric Genetics Clinic main office line. Ask to make an appointment at the Fragile X Syndrome Clinic. They will tell you what information needs to be faxed to them to make the appointment.

FXS
Ages 0-18
Ages 19-21
Ages 22+
FORWARD participant

University of Minnesota

Masonic Institute for the Developing Brain (MIDB)

2025 East River Road
Minneapolis, Minnesota, 55414
United States
Phone: 612-624-0183
Member of the Fragile X Clinical & Research Consortium

Team

Amy Esler, PhD, LP
Medical Director
Desirae Rambeck
Clinic Coordinator
FXTAS
Ages 22+

University of North Carolina

School of Medicine - Neurology, Movement Disorders Center - Ataxia Clinic


Chapel Hill, North Carolina,
United States

NAF Ataxia Center of Excellence

Phone: 984-974-4401

Team

Hokuto Morita, MD, MA
FXTAS
Ages 22+

University of Utah

Department of Neurology


Salt Lake City, Utah,
United States

NAF Ataxia Center of Excellence

Phone: 801-213-9500

Team

Paola Testini, MD
FXS
Ages 0-18
Ages 19-21
Ages 22+

University of Utah and Primary Children’s Hospital

Fragile X Clinic

81 N. Mario Capecchi Dr.
Salt Lake City, Utah, 84113
United States
Phone: 801-587-2255
Member of the Fragile X Clinical & Research Consortium

Team

Victoria Wilkins, MD, MPH
Medical Director
Katie Reynolds
Operations & Administration
Brittany Gowarty-Weinstock, MA-C
Clinic Coordinator
FXTAS
Ages 22+

University of Washington

Department of Neurology


Seattle, Washington,
United States

NAF Ataxia Center of Excellence

Phone: 206-520-5000

Team

Marie Davis, MD, PhD
FXTAS
Ages 22+

University of Washington

Department of Neurology, Swedish Neuroscience Institute


Seattle, Washington,
United States

NAF Ataxia Center of Excellence

Team

Pravin Khemani, MD
FXS
FORWARD participant

Children’s Hospital of Pittsburgh of UPMC

Fragile X Center

3420 Fifth Avenue
Pittsburgh, Pennsylvania, 15213
United States
Phone: 412-692-5560

Team

Robyn Filipink, MD
Medical Director & Clinic Coordinator
FXS
Ages 0-18
FORWARD participant

Washington University

Fragile X Clinic

4444 Forest Park Avenue
St. Louis, Missouri, 63110
United States
Phone: 314-286-1700
Member of the Fragile X Clinical & Research Consortium

Team

Gregory Cejas, MD
Director
Michele Ruggeri
Clinic Coordinator

Fly With Me Fund

The Fly with Me Fund provides financial assistance for families to travel to a Fragile X member clinic of the Fragile X Clinical and Research Consortium (FXCRC) to receive the most appropriate evaluation and treatment services.

How It Works

The application must be submitted by a Fragile X Clinical and Research Consortium member clinic. To begin the process:

  • Locate a clinic near you.
  • Reach out to them and ask to speak to the medical director or clinic coordinator.
  • The medical director or clinic coordinator may request additional information to determine eligibility.

Special thanks to the Silver Family for their continuous fundraising efforts that make this program possible.