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
University of Alabama – Sparks Clinics
930 20th St S, Birmingham, AL 35205
Contact: Jane Lane, RN, BSN jlane@uab.edu 800-822-2472, Ext 7
Fax: 1-205-975-2380
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
744 52nd Street Oakland, CA 94609
Contact: Diane Matlock
Diane.Matlock@ucsf.edu
Phone: 510-595-5458
Fax: 925-979-4059
USC UCEDD – Rett Syndrome Clinic
Children’s Hospital Los Angeles
Director: Kathryn Smith, RN, DrPH
Rett Clinic
USC UCEDD Rett Syndrome Clinic
Children’s Hospital Los Angeles
3250 Wilshire Blvd., 5th floor
Los Angeles, CA 90010
Director: Kathryn Smith, RN, DrPH – kasmith@chla.usc.edu
Phone: 323-361-8301
Fax: 1-323-361-8305
Rady Children’s Hospital
Richard Haas, MD
Rady Children’s Hospital – San Diego
Medical Office Building, 4th Floor, North
3030 Children’s Way
San Diego, CA 92123
Director: Richard Haas
For appointments call: 858-966-5819
Fax: 858-966-4930
Colorado
Children’s Hospital Colorado and U of C School of Medicine
13123 E 16th Ave, B-155, Aurora CO 80045
Director: Dr. Tim Benke
Clinic Contact: Tristen Dinkel, Nurse Clinic Coordinator
Email: rettclinic@childrenscolorado.org
Phone: 720-777-4363
Fax: 720-478-7103
Georgia
Rett Syndrome and MECP2 Related Disorders Clinic
Center For Rare Neurological Diseases
5600 Oakbrook Parkway, Suite 120, Norcross, GA 30093
Director: Dr. Daniel Tarquinio
Clinic Contact: Gina McClain – gina@rareneuro.com
Research Director: Alice Bruce – alice@rareneuro.com
Phone: 617-984-9091
Fax: 770-200-1693
Illinois
Rush University Medical Center
1725 W. Harrison St.
Suite 710
Chicago, IL 60612
Directors: Dr. Peter Heydemann & Dr. Colleen Burhfiend
For Appointments Phone: (312) 942-3034
Maryland
Kennedy Krieger Institute
Dr. Connie Smith-Hicks
Director, Rett Syndrome Research Project
Department of Neurogenetics
Kennedy Krieger Institute
801 North Broadway
Baltimore, MD 21205
888-554-2080, Ext. 2778 or 443-923-9400
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
300 Longwood Avenue, Fegan 11
Boston, MA 02115
Email: rettresearch@childrens.harvard.edu
Ph. 617-355-6388; F. 617-730-0279
Minnesota
Gillette Children’s
Dr. Art Beisang (pediatric services)
Dr. Jill Gettings(adult services)
Rett Syndrome Services
Gillette Children’s Hospital, Phalen Clinic
435 Phalen Blvd
St. Paul, MN 55130
651-290-8707
Missouri
Rett Syndrome and Related Spectrum Disorders Clinic
St. Louis Children’s Hospital
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
1 Children’s Place, Suite 2130
Saint Louis, Missouri 63110
Coordinator: Wendy Sanders – wsanders@wustl.edu
Information: 1-800-678-5437
Fax: 1-314-454-4225
New York
Tri-State Rett Syndrome Center
Dr. Aleksandra Djukic
Director, Tri-State Rett Syndrome Center
Tri-State Rett Syndrome Center
Children’s Hospital at Montefiore (CHAM)
3415 Bainbridge Ave, 4th Floor
Bronx, NY 10467
Phone: 718-920-4378
Fax: 718-654-8078
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
Fax: 585-275-3683
Ohio
Cincinnati Children’s Hospital Medical Center
Dr. Shannon Standridge
Pediatric Neurology and Developmental and Behavioral Pediatrics
Directors, Rett Syndrome Clinic
Cincinnati Children’s Hospital Medical Center
3333 Burnet Avenue
Cincinnati, OH 45229
Contact: rett@cchmc.org
For appointments call: 513-636-4222
Oregon
Child Development and Rehabilitation Center
Oregon Health and Sciences University
Dr. Amelia B. Roth
Developmental and Behavioral Pediatrician
707 SW Gaines St
Portland, Oregon 97239
dobbs@ohsu.edu
Information: 503-494-8311
Pennsylvania
Buerger Center for Advanced Pediatric Care
Children’s Hospital of Philadelphia
Dr. Eric Marsh
Division of Neurology
Children’s Hospital of Philadelphia
3500 Civic Center Blvd
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: Kimberly Ivery, LPN (Peds)
1-864-240-3146 or kivery@shrinenet.org or 1-888-442-4363 (Adults)
Tennesse
Vanderbilt University Medical Center
Dr. Jeffrey Neul
Rett Syndrome and Related Disorders research program
Jeffrey L. Neul, MD, PhD, Director, Vanderbilt Kennedy Center
110 Magnolia Circle
Nashville, TN 37203
Contact: 615-875-9311
Email: rettsyndrome@vumc.org
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
Fax: 832-825-7388
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.
