Find a Clinic
Finding the right clinic is an essential step in accessing specialized care for Rett syndrome. The International Rett Syndrome Foundation (IRSF) offers resources to connect families with the leading experts in the field. We support families in navigating their options for care and research participation.
Rett Syndrome Providers
Rett syndrome is a rare disorder, so an individual’s primary care may come from local providers who are not familiar with Rett syndrome. Rett syndrome clinics understand the diagnostic criteria of Rett syndrome and are dedicated to identifying the various needs of those diagnosed. Clinic physicians can also be a source of expert advice for your local care provider to consult with if complex issues arise.
Below you’ll find contact information for the U.S.-based clinics that IRSF designates as Centers of Excellence for best-in-class care, as well as information on clinics worldwide provided by our network of Rett Syndrome Associations.
IRSF Center of Excellence Network
The IRSF Center of Excellence (CoE) Network brings together top specialists in Rett syndrome care. These centers provide comprehensive care and research opportunities for families affected by Rett syndrome.
The CoE Network ensures families have access to multidisciplinary teams that can address the wide-ranging aspects of Rett syndrome. From clinical care to participation in clinical trials, these centers are at the forefront of advancing treatment and improving quality of life for those affected by Rett syndrome.
U.S. Clinics
Alabama
Birmingham, AL
Children's of Alabama
Hospital Name
Rett Syndrome Clinic
Clinic Name
University of Alabama at Birmingham (UAB)
University Affiliation
Amitha Ananth, MD
Medical Director
1600 7th Avenue South, Birmingham, AL 35233
Clinic Address
(205) 638-2551
Clinic Phone
Colorado
Aurora, CO
Children's Hospital Colorado
Hospital Name
Rett Clinic
Clinic Name
Neuroscience Institute
Department
University of Colorado
University Affiliation
Tim Benke, MD, PhD
Medical Director
No Age Limit
Patient Age Limit
13123 E. 16th Avenue, Aurora, CO 80045
Clinic Address
(720) 777-4798
Clinic Phone
rettclinic@childrenscolorado.org
Clinic Email
Illinois
Chicago, il
Rush University Medical Center
Hospital Name
Rush Rett Care Program
Clinic Name
Peter Heydemann, MD / Colleen Buhrfiend, MD
Medical Director
1725 W Harrison Street, Chicago, IL 60612
Clinic Address
(312) 942-3034
Clinic Phone
Massachusetts
Boston, ma
Boston Children's Hospital
Hospital Name
Rett Syndrome Program
Clinic Name
David Lieberman, MD, PhD
Medical Director
300 Longwood Avenue, Boston, MA 02115
Clinic Address
(617) 355-2063
Clinic Phone
rettresearch@childrens.harvard.edu
Clinic Email
Missouri
St. Louis, Mo
St. Louis Children's Hospital
Hospital Name
Rett Spectrum Clinic
Clinic Name
Neurology
Department
Washington University School of Medicine
University Affiliation
Robin Ryther, MD, PhD / Judy Weisenberg, MD
Medical Director
No Age Limit
Patient Age Limit
One Children's Place, Suite 2130, St. Louis, MO 63110
Clinic Address
(314) 454-6120
Clinic Phone
Clinic Email
North Carolina
Chapel Hill, nc
UNC Children's Hospital
Hospital Name
UNC Neurology Rett Syndrome Clinic
Clinic Name
UNC School of Medicine
University Affiliation
Yael Shiloh-Malawsky, MD / Diana Cejas, MD, MPH
Medical Director
6011 Farrington Road, Suite 101, Chapel Hill, NC 27517
Clinic Address
(984) 974-7337
Clinic Phone
(984) 974-5437 For Referrals
Clinic Fax
Pennsylvania
Philadelphia, PA
Children's Hospital of Philadelphia (CHOP)
Hospital Name
Rett Syndrome Clinic
Clinic Name
Division of Neurology
Department
Eric Marsh, MD, PhD
Medical Director
All ages, adults in consultative role only (must already have established primary care, adult neurologist if patient has epilepsy, etc.)
Patient Age Limit
3500 Civic Center Boulevard, Philadelphia, PA 19104
Clinic Address
(267) 426-1242
Clinic Phone
215-590-1771
Clinic Fax
Clinic Email
Tennessee
Nashville, tN
Vanderbilt University Medical Center/Vanderbilt Kennedy Center
Hospital Name
Vanderbilt Rett Syndrome Clinic
Clinic Name
Cary Fu, MD / Jeffrey Neul, MD, PhD
Medical Director
2200 Children's Way, Doctors Office Tower, 9th Floor Nashville, TN 37232
Clinic Address
(615) 936-5536
Clinic Phone
Clinic Email
California
Oakland, CA
UCSF Benioff Children's Hospitals Oakland
Hospital Name
Katie's Clinic for Rett Syndrome
Clinic Name
Jennifer Martelle Tu, MD, PhD
Medical Director
2401 Shadelands Drive, Walnut Creek, CA 94598
Clinic Address
510-428-3590
Clinic Phone
Los Angeles, CA
Children's Hospital Los Angeles (CHLA)
Hospital Name
Rett Clinic
Clinic Name
Neurological Institute
Department
Keck School of Medicine, University of Southern California
University Affiliation
Payal Gu, MD
Medical Director
0-21 Years / Single Consultation if 21+
Patient Age Limit
4650 Sunset Boulevard, Los Angeles, CA 90027
Clinic Address
(323) 361-2471
Clinic Phone
Clinic Email
Orange, CA
Children's Hospital Orange County (CHOC)
Hospital Name
Rett Syndrome Center of Excellence
Clinic Name
Thompson Autism and Neurodevelopmental Center at CHOC
Department
Pilar Pichon, MD
Medical Director
170 South Main Street, Orange, CA 92868
Clinic Address
(714) 288-7651
Clinic Phone
San Diego, CA
Rady Children's Hospital-San Diego
Hospital Name
Rett Syndrome Clinic
Clinic Name
University of California, San Diego (UCSD)
University Affiliation
Natalie Guido-Estrada, MD
Medical Director
3030 Children's Way, San Diego, CA 92123
Clinic Address
(858) 966-5819 (Option 4 then Option 4)
Clinic Phone
Florida
Miami, Fl
Nicklaus Children's Hospital
Hospital Name
Rett Syndrome Clinic
Clinic Name
Paula Schleifer, MD
Medical Director
3100 SW 62nd Avenue, Miami, FL 33155
Clinic Address
(305) 666-6511 ext. 2380
Clinic Phone
Maryland
Baltimore, Md
Kennedy Krieger Institute
Hospital Name
Rett Syndrome and Related Disorders Clinic
Clinic Name
Constance Smith-Hicks, MD, PhD
Medical Director
No Age Limit
Patient Age Limit
801 North Broadway, Baltimore, MD 21205
Clinic Address
(443) 923-2778
Clinic Phone
GeneticsClinic@kennedykrieger.org
Clinic Email
Minnesota
St. paul, mn
Gillette Children's Specialty Healthcare
Hospital Name
Rett and Related Disorders Clinic
Clinic Name
Art Beisang, MD / Tim Feyma, MD
Medical Director
200 University Avenue East, St. Paul, MN 55051
Clinic Address
(651) 228-6455
Clinic Phone
phalenpedsclinic@gillettechildrens.com
Clinic Email
New York
Bronx, Ny
Children's Hospital at Montefiore (CHAM)
Hospital Name
Center for Rett Syndrome
Clinic Name
Division of Neurology
Department
Albert Einstein College of Medicine
University Affiliation
Aleksandra (Sasha) Jacobs, MD, PhD
Medical Director
3415 Bainbridge Avenue, Floor 4, Bronx, NY 10467
Clinic Address
(718) 920-4378
Clinic Phone
Clinic Email
Ohio
Cincinnati, oh
Cincinnati Children's Hospital Medical Center
Hospital Name
Vinaya Rett Syndrome and Related Spectrum Disorders Clinic
Clinic Name
Division of Neurology
Department
University of Cincinnati College of Medicine
University Affiliation
Shannon Standridge, DO, MPH
Medical Director
No Age Limit
Patient Age Limit
3333 Burnet Avenue, Cincinnati, OH 45229
Clinic Address
(513) 636-4222
Clinic Phone
513-636-3980 or 513-803-1111(984) For Referrals
Clinic Fax
Clinic Email
COLumbus, oh
Nationwide Children's Hospital
Hospital Name
Rett Syndrome Clinic
Clinic Name
Neurology
Department
Christopher Beatty, MD
Medical Director
No Age Limit
Patient Age Limit
700 Children's Drive, Columbus, OH 43205
Clinic Address
(614) 722-4625
Clinic Phone
rettsyndromeclinicadmin@nationwidechildrens.org
Clinic Email
South Carolina
Greenwood, SC
Greenwood Genetic Center
Hospital Name
Rett Syndrome Clinic
Clinic Name
Steven A. Skinner, MD
Medical Director
Rett Syndrome Genetic Clinic: no age limit Rett Syndrome Pediatric Multidisciplinary Clinic: 0-21 years
Patient Age Limit
106 Gregor Mendel Circle, Greenwood, SC 29646
Clinic Address
(864) 941-8100
Clinic Phone
864-941-8114 For Referrals
Clinic Fax
Clinic Email
Texas
Houston, Tx
Texas Children's Hospital
Hospital Name
Blue Bird Circle Rett Center
Clinic Name
Baylor College of Medicine
University Affiliation
Bernhard Suter, MD
Medical Director
6701 Fannin Street, 9th Floor, Houston, TX 77030
Clinic Address
(832) 822-7388
Clinic Phone
Clinic Email
Dallas, Tx
Children's Health Dallas
Hospital Name
Rett and Related Disorders Clinic
Clinic Name
University of Texas Southwestern
University Affiliation
Dallas Armstrong, MD
Medical Director
No Age Limit
Patient Age Limit
2350 N Stemmons Fwy, Unit F5400, Dallas, TX 75207
Clinic Address
(214) 456-2768
Clinic Phone
dallasneurologyclinic@childrens.com
Clinic Email
International Clinics
Asia-Pacific
Australia
Westmead, New South Wales
The Children’s Hospital at Westmead
Hospital Name
The Genetic Metabolic Disorders Service
Clinic Name
Dr. Kaustuv Bhattacharya
Medical Director
Hainsworth Street, Locked Bag 4001 Westmead NSW 2145 Australia
Clinic Address
02 9845 3654
Clinic Phone
02 9845 3121
Clinic Fax
Prof. Carolyn Ellaway
Clinic Email
Brisbane, Queensland
Queensland Children’s Hospital
Hospital Name
Child Development Program
Clinic Name
Level 6, 501 Stanley Street, South Brisbane, Queensland 4101
Clinic Address
1300 366 039
Clinic Phone
07 3068 5126
Clinic Fax
CDPAccessService@health.qld.gov.au
Clinic Email
parkville, Victoria
Royal Children’s Hospital, Melbourne
Hospital Name
50 Flemington Road, Parkville Victoria, Australia 3052
Clinic Address
61 3 9345 5898
Clinic Phone
Clinic Email
Japan
Tokyo, Japan
Yoshiko Nomura Neurological Clinic for Children (NNCC)
Hospital Name
Ochanomizu-Myojn Building 3rd Floor, 1-2-13 Yushima Bunkyoku Tokyo 113-0034 Japan
Clinic Address
81 3 3258 5563 (or 090 1732 8868 for cell)
Clinic Phone
81 3 3358 5565
Clinic Fax
Clinic Email
North America
Canada
Toronto, ON
Holland Bloorview Kids Rehabilitation Hospital
Hospital Name
Complex Care Rett Syndrome Pathway Clinic
Clinic Name
Dr. Laura McAdam
Medical Director
150 Kilgour Road, Toronto, ON M4G 1R8
Clinic Address
416 425 6220 Ext. 3210
Clinic Phone
416 424 3837
Clinic Fax
Nancy Campbell, RPN at ncampbell@hollandbloorview.ca
Clinic Email
ottawa, on
Children’s Hospital of Eastern Ontario Rett Syndrome Clinic
Hospital Name
Dr. Peter Humphreys Rett Syndrome Clinic
Clinic Name
Dr. Melissa Carter
Medical Director
401 Smyth Road Ottawa, ON K1H 8L1
Clinic Address
613 737 7600 Ext. 3227
Clinic Phone
613 738 4879
Clinic Fax
Renee Brannan, RN at Brannan@cheo.on.ca
Clinic Email
London, on
Thames Valley Children’s Centre
Hospital Name
Dr. Peter Humphreys Rett Syndrome Clinic
Clinic Name
Dr. Victoria Siu
Medical Director
Children only (not adults) from within the catchment area of Southwestern Ontario.
Patient Age Limit
779 Base Line Rd East, London, ON N6C 5Y6
Clinic Address
519 685 8700 Ext. 53406
Clinic Phone
Rachel Caris, RN at rachel.caris@tvcc.on.ca
Clinic Email
Vancouver, BC
BC Children’s Hospital
Hospital Name
The Neurological Care Centre
Clinic Name
Dr. Anita Datta
Medical Director
4480 Oak Street, Vancouver, BC V6H 3V4
Clinic Address
604 875 2121
Clinic Phone
604 875 2285
Clinic Fax
Janet Espino
Primary Contact
Europe
Austria
Vienna, Austria
Vienna Medical University
Hospital Name
Vienna Center for Rare and Undiagnosed Diseases
Clinic Name
Dr. Kaan Boztug, kboztug@cemm.oeaw.ac.at
Medical Director
Lazarettgasse 14, AKH BT 25.3, 1090 Vienna
Clinic Address
Clinic Email
Denmark
Glostrup, Denmark
Kennedy Centret, Rigshospitalet
Hospital Name
Clinical Genetic Clinic – Kennedy Center
Clinic Name
Anne-Marie Bisgaard Pedersen, MD PhD
Medical Director
Gamle Landevej 7, Glostrup 2600, Denmark
Clinic Address
43 26 01 00
Clinic Phone
43 43 11 30
Clinic Fax
anne-marie.bisgaard.pedersen@regionh.dk
Clinic Email
France
Paris, France
Necker-Enfants Malades University Hospital
Hospital Name
Pr Nadia Bahi-Buisson
Clinic Name
149 Rue de Sèvres, 75015 Paris, France
Clinic Address
43 26 01 00
Clinic Phone
Clinic Email
Marseille, France
APHM Hôpitaux Universitaires de Marseille
Hospital Name
Pr Mathieu Milh
Medical Lead
278 Rue Saint-Pierre, 13005 Marseille
Clinic Address
04 91 38 55 80
Clinic Phone
Sophie Colas at sophie.colas@ap-hm.fr
Clinic Email
Germany
Kassel, Germany
Klinikum Kassel
Hospital Name
Pr Bernd Wilken
Medical Lead
Mönchebergstr. 41-43, 34125 Kassel, Germany
Clinic Address
49 0 561 980 3096
Clinic Phone
49 0 561 980 6946
Clinic Fax
Clinic Email
Israel
Ramat Gan, Israel
Sheba Medical Center
Hospital Name
Pediatric Neurology Institute – The Rett Syndrome Center
Clinic Name
Prof. Bruria Gidoni-Ben-Zeev
Medical Lead
Derech Sheba 2, Ramat Gan, Israel
Clinic Address
972 77 996 6905
Clinic Phone
972 3 530 8040
Clinic Fax
Netherlands
Maastricht, Netherlands
Maastricht University Medical Centre
Hospital Name
Rett Expertise Centre
Clinic Name