Clinics
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 various needs of those diagnosed with Rett syndrome. 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.
Most of your child’s care will come from local providers who may not be as familiar with Rett syndrome, so visiting a specialty clinic will benefit your child and provide a source of 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.
The Rett Consortium logo indicates a site that is participating in the NIH Natural History Study, in partnership with Rettsyndrome.org and other related advocacy groups. We highly encourage families to enroll to help with research towards finding a cure.
Alabama
UAB
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
California
UCSF Benioff Children’s Hospital Oakland
Dr. Mary Jones
Director, Katie’s Clinic for Rett Syndrome and Related Disorders
UCSF Benioff Children’s Hospital Oakland
Outpatient Center, 5th floor
744 52nd Street Oakland, CA 94609
Program Coordinator: Diane Matlock
Diane.Matlock@ucsf.edu
Phone: 510-595-5458
Fax: 925-979-4059
Children’s Hospital Los Angeles
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
Rady Children’s Hospital
Richard Haas, MD
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
Colorado
Children’s Hospital Colorado and U of C School of Medicine
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
Georgia
Center for Rare Neurological Diseases
Daniel Tarquinio
Rett syndrome and MECP2 Related Disorders Clinic Director
Center for Rare Neurological Diseases
5600 Oakbrook Parkway, Suite 120
Norcross, GA 30093
daniel@rareneuro.com
Office: 617-984-9091
Mobile: 207-590-6945
Fax: 617-328-3968
For an appointment, please contact Heather O’Leary
Illinois
Rush University Medical Center
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
Maryland
Kennedy Krieger Institute
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
Children’s Hospital Boston
Dr. David Lieberman
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: Kedna Hermilus, Patient Experience Representative
Ph. 617-355-2063; F. 617-730-0288
Minnesota
Gillette Children’s
Dr. Art Beisang (pediatric services)
Dr. Jill Gettings(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
Missouri
Washington University in St. Louis & Children’s Hospital St. Louis
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
Appointments: Call Sara Harrison at 314-454-6120
New York
Albert Einstein College of Medicine Montefiore Medical Center Children’s Hospital at Montefiore
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
University of Rochester Medical Center
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
Ohio
Cincinnati Children’s Hospital Medical Center
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
Oregon
Oregon Health and Sciences University Child Development & Rehabilitation Center
Dr. Amelia B. Roth
Developmental and Behavioral Pediatrician
901 E 18th Avenue
Eugene, OR, 97401
rothame@ohsu.edu
Pennslyvania
Children’s Hospital of Philadelphia
Dr. Eric Marsh
Division of Neurology
Children’s Hospital of Philadelphia
34th and Civic Center Boulevard
Philadelphia, PA 19104
Contact 215-590-1719 and follow prompts Neurogenetics
South Carolina
Greenwood Genetic Center
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
Tennesse
Vanderbilt University Medical Center
Drs. Cary Fu and Sarika Peters
Rett Syndrome and Related Disorders research program
Jeffrey L. Neul, MD, PhD, Director, Vanderbilt Kennedy Center
One Magnolia Circle
Nashville, TN 37203
Contact: Sarika Peters, PhD
sarika.u.peters@vanderbilt.edu
Phone: 615-875-9311
Texas
Texas Children’s Hospital Blue Bird Circle Rett Center
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: Gay Fullerton
North America
Canada
Complex Care Rett Syndrome Pathway
Holland Bloorview Kids Rehabilitation Hospital
150 Kilgour Road, Toronto, ON M4G 1R8
Leadership: Dr. Lauzra 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
Dr. Victoria Siu, Medical Lead
Rachel Caris, RN
Rett Syndrome Clinic
Thames Valley Children’s Centre
779 Base Line Road East, London, Ontario N6C 5Y6 Canada
Primary Contact: Rachel Caris
519-685-8700, Ext 53406
rachel.caris@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.
Asia
Australia
The Children’s Hospital at Westmead
Dr. Carolyn Ellaway
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
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
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.