Rett Syndrome Clinics

North America | Canada | Europe | Asia

 

The clinics listed here have distinguished themselves as hospitals and clinicians who understand the diagnostic criteria of Rett syndrome and related disorders, and are dedicated to identifying the multiple needs of those diagnosed with the disorder.  Their goal is to provide excellent medical care and consultation, improve quality of life, and advance clinical research in order to change the natural history of our children.

Individuals with Rett syndrome (RTT) have complex and lifelong neurological and medical needs that are unique.  The majority of care for individuals with Rett syndrome will be provided from a local care team that is not likely to be familiar with Rett syndrome.  Indeed many physicians will go their entire career without ever having another patient with this diagnosis.  A visit to a Rett syndrome specialty clinic will benefit the child, her family, and will provide a bridge to knowledgeable experts for the local care provider to consult with if complex issues arise. 

Please contact the clinic directly to schedule an appointment and discuss payment options and insurance coverage.

Rett ConsortiumThe Rett Consortium logo (pictured to the right) indicates a site that is participating in the NIH RDCRN NCATS U54-funded Natural History Study, in partnership with Rettsyndrome.org and other related patient advocacy groups.  We encourage every family to enroll if possible.  Large enrollment creates trend data that is crucial to the study of our related disorders, and also demonstrates to the research community that we, as patient families and private foundations, are an organized, eager, and willing “Research-Ready” community and partner for their work.

NORTH AMERICA

USA

Alabama

Dr. Alan Percy
Director, Rett Clinic and Research Center
UAB - Civitan International Research Center
1720 - 2nd Avenue South CIRC 320E
Birmingham, Alabama 35294-0021
Contact: Jerry Childers 800-822-2472, Ext 7
Rett Consortium

California

Dr. Mary Jones
Director, Katie's Clinic for Rett Syndrome and Related Disorders
UCSF Benioff Children's Hospital Oakland
2401 Shadelands Dr., Walnut Creek, CA 94598
Program Coordinator: Erica Robertson
ERobertson@mail.cho.org
Phone: 925-979-4055
Fax: 925-979-4059

Watch the Oakland video.

Rett Consortium

 

Kathryn Smith, RN, DrPH
Rett Clinic
USC UCEDD Rett Syndrome Clinic
Children's Hospital Los Angeles
4650 Sunset Blvd., MS#53
Los Angeles, CA 90027
Contact Kathy Smith: 323-361-8301
For appointments call: 323-361-3849

 

Jeffrey Neul, MD, PhD
Rady Children's Hospital – San Diego
Nelson Pavilion, 3rd Floor
8001 Frost Street
San Diego, CA 92123
For appointments call: Vanessa Lopez 858-966-6458
Rett Consortium

 


Colorado

Dr. Tim Benke
Director, Rett Syndrome Clinic
Depts. of Pediatrics, Neurology and Pharmacology
Children’s Hospital Colorado
13123 East 16th Avenue, #B-155
Aurora, CO 80045
Contact: Tristen Dinkel, RN, Clinic Coordinator
rettclinic@childrenscolorado.org
720-777-4363

Watch the Colorado clinic video.

Rett Consortium

 


Georgia

Emory University Hospital
Dr Daniel Tarquinio
Director, Rett Syndrome Clinic
North Druid Hills Neurology Offices
1605 Chantilly Drive NE, Suite 300
Atlanta, GA 30324
Office: 404-785-4688
Fax: 404-785-4750
Contact: Larsche Reaves, Lead Scheduler, Pediatric Neurology Practice
404-785-4783


Illinois

Dr. Peter Heydemann
Dr. Colleen Burhfiend
Medical Director Rett syndrome Clinic
Rush University Medical Center
1725 W. Harrison St.
Suite 710
Chicago, IL 60612
For Appointments Phone: (312) 942-4036

Rett Consortium

 


Maryland

Dr. Sakkubai Naidu
Director, Rett Syndrome Research Project
Department of Neurogenetics
Kennedy Krieger Institute, John’s Hopkins School of Medicine
707 North Broadway
Baltimore, MD 21205
800-873-3377, Ext. 2778 or 443-923-2778


Massachusetts

Dr. David Urion, MD
Acting Clinic Director, Rett Syndrome Program
Dr. Mustafa Sahin, MD, PhD, Research Program Director
Boston Children's Hospital/Harvard Medical School
Fegan 11
300 Longwood Avenue
Boston, MA 02115
Contact: Allison Robinson, Program Administrator
617-355-8994

Rett Consortium

 

Minnesota

Dr. Art Beisang (pediatric services)
Dr. Robert Wagner (adult services)
Rett Syndrome Services
Gillette Children’s Specialty Healthcare
200 E. University Ave.
St. Paul, MN 55101
Resource Nurse La’tosia Erickson 651-229-3897
Gillette Children’s Specialty Healthcare 130.54 Kb
Rett Consortium

Missouri

Dr. Robin Ryther, MD, PhD, Director
Dr. Judy Weisenberg, MD, Co-Director
Rett Syndrome and Related Spectrum Disorders Clinic
Washington University School of Medicine
Saint Louis Children’s Hospital
4444 Forest Park Avenue, Suite 2600
Saint Louis, Missouri  63108 
To make an appointment:
314-454-6120 please ask to speak to clinic coordinator Amy Limpert

Rett Consortium

New York

Dr. Aleksandra Djukic
Director, Tri-State Rett Syndrome Center
Albert Einstein College of Medicine
Montefiore Medical Center
Children’s Hospital at Montefiore (CHAM)
3415 Bainbridge Ave, 4th Floor
Bronx, NY 10467
Phone: 347-640-2671 or 718-920-4378
rett@montefiore.org

Drs. Alex Paciorkowski and Laurie Seltzer
Neurology and Neurogenetics Dept
University of Rochester Medical Center
919 Westfall Road, Clinton Crossings Bldg C, Suite 220
Rochester, NY 14618
Appointment: (585) 275-2808
Appointment: (585) 341-7500
Rett Consortium

 


Ohio

Drs. Shannon Standridge and Patty Manning
Pediatric Neurology and Developmental and Behavioral Pediatrics
Co-Directors, Rett Syndrome Clinic
Cincinnati Children’s Hospital Medical Center
3333 Burnet Avenue
Cincinnati, OH 45229
Contact: Anita Boyer, Administrative Coordinator
rett@cchmc.org
For appointments call: 513-636-4222 option 1
Rett Consortium

Oregon

Dr. Mario Petersen
Director Rett Syndrome Clinic
Child Development and Rehabilitation Center
Oregon Health and Sciences University
P.O. Box 574
Portland, OR 97207
Contact: 800-452-3563 or 503-494-8095


Pennsylvania

Dr. Eric Marsh
Division of Neurology
Children's Hospital of Philadelphia
34th and Civic Center Boulevard
Philadelphia, PA 19104
Dial 215-590-1719 and follow the prompts for scheduling for Neurogenetics
Rett Consortium

 


South Carolina

Dr. Steve Skinner
Director, Greenwood Genetic Center
106 Gregor Mendel Circle
Greenwood, SC  29646
Contact:  Fran Annese, LMSW
1-888-442-4363 or fran@ggc.org
Rett Consortium

 


Tennessee

Drs. Cary Fu and Sarika Peters
Rett Syndrome and Related Disorders research program
Vanderbilt University School of Medicine
Vanderbilt Kennedy Center for Research on Human Development
One Magnolia Circle
Nashville, TN 37203
Contact: Sarika Peters, PhD
sarika.u.peters@vanderbilt.edu
Phone: 615-875-9311
Rett Consortium

Texas

Dr. Daniel G. Glaze
Medical Director
The Blue Bird Circle Rett Center
Texas Children's Hospital
6701 Fannin St., Suite 1250
Houston, TX 77030
1-888-430-7388(RETT) or 832-822-7388
Fax: 832-825-7388
Contact: Judy Barrish, BSN, RN Patient Manager/Project Coordinator JOBarris@TexasChildrensHospital.org

Watch the clinic video

Rett Consortium

 


Canada

Complex Care Rett Syndrome Pathway

Holland Bloorview Kids Rehabilitation Hospital
150 Kilgour Road
Toronto, ON  M4G 1R8
Leadership: Dr. Laura McAdam & Erin Brandon, MN, RN (EC), NP-Pediatrics
Clinic coordinator: Nancy Campbell, RPN
Ph: 416-425-6220
Fax: 416-424-3837
Melissa.carter@sickkids.ca / tgresleyjones@hollandbloorview.ca / ncampbell@hollandbloorview.ca

South Western Ontario Rett Syndrome Clinic, Canada

Dr. Victoria Siu, Medical Lead
Dorothy Harris, Nurse Clinician
Rett Syndrome Clinic
Thames Valley Children's Centre
779 Base Line Road East
London, Ontario N6C 5Y6
Canada
Primary Contact: Dorothy Harris
519-685-8700, Ext 53406
dorothy.harris@tvcc.on.ca

Please be aware that this clinic can only accept referrals for children (not adults) from within the catchment area of Southwestern Ontario.

Children’s Hospital of Eastern Ontario Rett Syndrome Clinic

Dr Peter Humphreys and Dr. Melissa Carter
Director, CHEO Rett Syndrome Clinic
Division of Neurology, Clinic C9
Children’s Hospital of Eastern Ontario
401 Smyth Road
Ottawa, ON, K1H8L1
Contact: Renee Brannan, Nurse Coordinator
Rett Syndrome Clinic Tel. 613-737-7600, Ext 2159


ASIA

Australia

Dr Carolyn Ellaway
The Children's Hospital at Westmead
Cnr Hawkesbury Rd & Hainsworth St
Locked Bag 4001
Westmead, Sydney NSW 2145
Australia
Contact: Clinic Coordinator Gayathri Parasivam
Ph 02 9845 3273


Japan

Yoshiko Nomura Neurological Clinic for Children (NNCC)
Ochanomizu-Myojn Building 3rd Floor, 1-2-13 Yushima Bunkyoku
Tokyo 113-0034 Japan
Tel: 81-3-3258-5563
Fax: 81-3-3358-5565
Cell phone: 090 1732 8868
E-mail: ynomura@wind.ocn.ne.jp
URL:   nomura-yoshiko-clinic.com
       nomura-child-neurology.com


EUROPE

Overview of Europen Experts [PDF]

Denmark

Center for Rett syndrome
Kennedy Center, Rigshospitalet
Department of Clinical Genetics
Gamle Landevej 7
2620 Glostrup
Primary contact: Anne-Marie Bisgaard Pedersen, MD PhD, Head of the Center
anne-marie.bisgaard.pedersen@regionh.dk


Netherlands

Rett Expertise Centre – Governor Kremers Centre
Maastricht University Medical Centre, PO Box 616
NL-6200 MD Maastricht (The Netherlands)
Primary contacts: Professor Leopold M G Curfs, Ph.D.
Eric E J Smeets, M.D. Ph.D.


Sweden

National Swedish Rett Center
Öneslingan 5, House A,
7th floor
Frösön
Sweden
Primary contact: Ingegerd Witt Engerström, M.D. Ph.D
Telephone: +46 63 15 48 10
Fax: +46 63 15 45 00
E-mail: rettcenter@regionjh.se

 

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