FIND A RETT CLINIC
Rett syndrome is a complex disorder and requires specialized care and understanding to help your child and family thrive. Rett syndrome clinics understand the diagnostic criteria of Rett syndrome and are dedicated to identifying the various needs of those diagnosed with Rett syndrome.
IRSF has designated 18 Rett clinics as Centers of Excellence. They are dedicated to providing best-in-class clinical care and have demonstrated the following:
- A physician director with expertise in Rett syndrome care
- Health care services that meet the unique needs of individuals with Rett
- Involvement in clinical trials
- Contribution to the IRSF Rett Syndrome Registry to increase understanding of Rett syndrome
Your child’s care may come from many local providers who may not be familiar with Rett syndrome. 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 note that clinic policies vary on the age of individuals with Rett treated, insurance accepted, etc. We recommend contacting the clinic directly to make an appointment, discuss payment & insurance options, and make sure you have the most up-to-date information.
Alabama
University of Alabama at Birmingham
Clinic Name: UAB/Children’s of Alabama Rett Syndrome Clinic
Medical Director: Amitha Ananth, MD
Clinic Address: Children’s of Alabama – 1600 7th Avenue South, Birmingham, AL 35233
Clinic Phone: (205) 638-2551
CLINIC WEBSITE
California
UCSF Benioff Children’s Hospital Oakland
Clinic Name: Katie’s Clinic for Rett Syndrome
Medical Director: Jennifer Martelle Tu, MD, PhD
Clinic Address: 744 52nd Street, Oakland, CA 94609
Clinic Phone: (510) 595-5458
CLINIC WEBSITE
Children’s Hospital Los Angeles
Clinic Name: Children’s Hospital Los Angeles Rett Syndrome Clinic
Department: Division of Neurology
Medical Director: Payal Gu, MD
Clinic Address: 4650 Sunset Blvd., Los Angeles, CA 90027
Clinic Phone: (323) 361-2471
Clinic Email: [email protected]
CLINIC WEBSITE
Colorado
Children’s Hospital Colorado
Clinic Name: Rett Clinic
Medical Director: Tim Benke, MD, PhD
Clinic Address: 13123 E. 16th Ave, Aurora, CO 80045
Clinic Phone: (720) 777-4363
Clinic Email: [email protected]
CLINIC WEBSITE
Illinois
Rush University Medical Center
Clinic Name: Rush Rett Care Program
Medical Directors: Peter Heydemann, MD & Collen Buhrfiend, MD
Clinic Address: 1725 W Harrison St., Chicago, IL 60612
Clinic Phone: (312) 942-3034
CLINIC WEBSITE
Maryland
Kennedy Krieger Institute
Clinic Name: Rett and Related Disorders Clinic
Medical Director: Connie Smith-Hicks, MD, PhD
Clinic Address: 801 North Broadway, Baltimore, MD 21205
Clinic Phone: (443) 923-2778
Clinic Email: [email protected]
CLINIC WEBSITE
Massachusetts
Boston Children’s Hospital
Clinic Name: Comprehensive Rett Syndrome Clinic
Department: Department of Neurology
Medical Director: David Liberman, MD, PhD
Clinic Address: Department of Neurology, Fegan 11 – 300 Longwood Ave, Boston, MA 02115
Clinic Phone: (617) 355-2063
Clinic Email: [email protected]
CLINIC WEBSITE
Minnesota
Gillette Children’s Specialty Healthcare
Clinic Name: Rett and Related Disorders Clinic
Medical Directors: Art Beisang, MD & Tim Feyma, MD
Clinic Address: 200 University Ave. East, St. Paul, MN 55051
Clinic Phone: (651) 228-6455
Clinic Email: [email protected]
Missouri
Washington University School of Medicine
Clinic Name: Rett Spectrum Clinic at Washington University School of Medicine and St. Louis Children’s Hospital
Medical Directors: Robin Ryther, MD, PhD & Judy Weisenberg, MD
Clinic Address: St. Louis Children’s Hospital – One Children’s Place, Suite 2130, St. Louis, MO 63110
Clinic Phone: (314) 454-6120
CLINIC WEBSITE
New York
Montefiore Medical Center/Albert Einstein College of Medicine
Clinic Name: Tri State Rett Syndrome Clinic
Medical Director: Aleksandra Djukic, MD, PhD
Clinic Address: 3415 Bainbridge Ave, Floor 4, Bronx, NY 10467
Clinic Phone: (718) 920-4378
Clinic Email: [email protected]
CLINIC WEBSITE
NORTH CAROLINA
The University of North Carolina at Chapel Hill
Clinic Name: Rett Syndrome Clinic
Medical Directors: Yael Shiloh-Malawsky, MD & Diana Cejas, MD, MPH
Clinic Address: 6011 Farrington Road, Suite 101, Chapel, Hill, NC 27517
Clinic Phone (scheduling): (984) 974-7337
For scheduling, please follow the phone menu to the schedulers then request to talk to Josh or Shanika on the pediatric neurology scheduling team.
Clinic Fax (for referrals): (984) 974-5437
Ohio
Cincinnati Children’s Hospital Medical Center
Clinic Name: Vinaya Rett Syndrome and Related Spectrum Disorders Clinic
Medical Director: Shannon Standridge, DO, MPH
Clinic Address: 3333 Burnet Avenue, Cincinnati, OH 45229
Clinic Phone: (513) 636-4222
CLINIC WEBSITE
Nationwide Children’s Hospital
Clinic Name: Rett Syndrome Clinic
Medical Director: Christopher Beatty, MD
Clinic Address: 700 Children’s Dr., Columbus, OH 43205
Clinic Phone: (614) 722-4625
Pennsylvania
The Children’s Hospital of Philadelphia
Clinic Name: Rett Syndrome Clinic
Medical Director: Eric Marsh, MD, PhD
Clinic Address: Beurger Center for Advanced Pediatric Care – 3500 Civic Center Blvd., Philadelphia, PA 19104
Clinic Phone: (267) 426-1242
Clinic Email: [email protected]
CLINIC WEBSITE
South Carolina
Greenwood Genetic Center
Medical Director: Steve Skinner, MD
Clinic Address: 106 Gregor Mendel Circle, Greenwood, SC 29646
Clinic Phone: (864) 941-8100
Tennessee
Vanderbilt University Medical Center/Vanderbilt Kennedy Center
Clinic Name: Vanderbilt Rett Syndrome Clinic
Medical Directors: Cary Fu, MD & Jeff Neul, MD, PhD
Clinic Address: 2200 Children’s Way, Doctors Office Tower, 9th Floor, Nashville, TN 37232
Clinic Phone: (615) 936-5536
Clinic Email: [email protected]
CLINIC WEBSITE
Texas
Baylor College of Medicine/Texas Children’s Hospital
Clinic Name: Blue Bird Circle Rett Center
Medical Director: Bernhard Suter, MD
Clinic Address: 6701 Fannin St., 9th Floor, Houston, TX 77030
Clinic Phone: (832) 822-7388
Clinic Email: [email protected]
CLINIC WEBSITE
University of Texas Southwestern/Children’s Health Dallas
Clinic Name: Rett and Related Disorders Clinic
Medical Director: Dallas Armstrong, MD
Clinic Address: 2350 N Stemmons Fwy, Unit F5400, Dallas, TX 75207
Clinic Phone: (214) 456-2768
Clinic Email: [email protected]
North America
Canada
Complex Care Rett Syndrome Pathway Clinic
Holland Bloorview Kids Rehabilitation Hospital
150 Kilgour Road, Toronto, ON M4G 1R8
Medical Lead: Dr. Laura McAdam
Primary Contact: Nancy Campbell, RPN
Tel: 416 425 6220 Ext. 3210
Fax: 416 424 3837
Website
Children’s Hospital of Eastern Ontario Rett Syndrome Clinic
Dr. Peter Humphreys Rett Syndrome Clinic
401 Smyth Road Ottawa, ON K1H 8L1
Medical Lead: Dr. Melissa Carter
Primary Contact: Renee Brannan, RN
Tel: 613 737 7600 Ext. 3227
Fax: 613 738 4879
Website
Thames Valley Children’s Centre
779 Base Line Rd East, London, ON N6C 5Y6
Medical Lead: Dr. Victoria Siu
Primary Contact: Rachel Caris, RN
Tel: 519 685 8700 Ext. 53406
Website
Please be aware that this clinic can only accept referrals for children (not adults) from within the catchment area of Southwestern Ontario.
BC Children’s Hospital
The Neurological Care Centre
4480 Oak Street, Vancouver, BC V6H 3V4
Medical Lead: Dr. Anita Datta
Primary Contact: Janet Espino
Tel: 604 875 2121
Fax: 604 875 2285
Website
Asia
Australia
The Children’s Hospital at Westmead
The Genetic Metabolic Disorders Service
Hainsworth Street, Locked Bag 4001 Westmead NSW 2145 Australia
Medical Lead: Dr. Kaustuv Bhattacharya
Primary Contact: Prof. Carolyn Ellaway
Tel: 02 9845 3654
Fax: 02 9845 3121
Website
Queensland Children’s Hospital
Child Development Program
Level 6, 501 Stanley Street, South Brisbane, Queensland 4101
Primary Contact: [email protected]
Tel: 1300 366 039
Fax: 07 3068 5126
Website
Royal Children’s Hospital, Melbourne
50 Flemington Road, Parkville Victoria, Australia 3052
Primary Contact: [email protected]
Tel: 61 3 9345 5898
Website
Japan
Yoshiko Nomura Neurological Clinic for Children (NNCC)
Ochanomizu-Myojn Building 3rd Floor, 1-2-13 Yushima Bunkyoku
Tokyo 113-0034 Japan
Primary Contact: [email protected]
Tel: 81 3 3258 5563
Fax: 81 3 3358 5565
Cell phone: 090 1732 8868
Website
Europe
Austria
Vienna Medical University
Vienna Center for Rare and Undiagnosed Diseases
Lazarettgasse 14, AKH BT 25.3, 1090 Vienna
Medical Lead: Dr. Kaan Boztug, [email protected]
Primary Contact: [email protected]
Website
Denmark
Kennedy Centret, Rigshospitalet
Clinical Genetic Clinic – Kennedy Center
Gamle Landevej 7, Glostrup 2600, Denmark
Medical Lead: Anne-Marie Bisgaard Pedersen, MD PhD
Primary Contact: [email protected]
Tel: 43 26 01 00
Fax: 43 43 11 30
Website
France
Necker-Enfants Malades University Hospital
149 Rue de Sèvres, 75015 Paris, France
Medical Lead: Pr Nadia Bahi-Buisson
Primary Contact: [email protected]
Tel: 01 42 19 26 61
Website
APHM Hôpitaux Universitaires de Marseille
278 Rue Saint-Pierre, 13005 Marseille
Medical Lead: Pr Mathieu Milh
Primary Contact: Sophie Colas
Tel : 04 91 38 55 80
Website
Germany
Klinikum Kassel
Mönchebergstr. 41-43, 34125 Kassel, Germany
Medical Lead: Pr Bernd Wilken
Primary Contact: [email protected]
Tel: 49 0 561 980 3096
Fax: 49 0 561 980 6946
Website
Israel
Sheba Medical Center
Pediatric Neurology Institute – The Rett Syndrome Center
Derech Sheba 2, Ramat Gan, Israel
Medical Lead: Prof. Bruria Gidoni-Ben-Zeev
Tel: 972 77 996 6905
Fax: 972 3 530 8040
Website
Netherlands
Maastricht University Medical Centre
Rett Expertise Centre
PO Box 5800, 6202 AZ Maastricht
Medical Leads: Professor Leopold M G Curfs, Ph.D.
Eric E J Smeets, M.D. Ph.D.
Primary Contact: [email protected]
Tel: 043 3875855
Website
Italy
Istituto Giannina Gaslini
Via Gerolamo Gaslini, 5, 16147 Genoa Italy
Medical Lead: Prof. Edvige Veneselli
Primary Contact: Dr. Maria Traverso
Tel: 339 2712005
Website
Ospedale San Paolo
Via Antonio di Rudinì, 8, 20142 Milano MI, Italy
Medical Lead: Prof. Maria Paola Canevini
Primary Contact: Dr. Alessia Mingarelli
Tel: 366 2909186
Policlinico Universitario Via Consolare
Valeria, 1, 98124 Messina ME, Italy
Medical Leads: Prof. De Luca Filippo and Gabriella Di Rosa, [email protected]
Primary Contact: [email protected]
Tel: 349 7386079
Website
Bambino Gesù Hospital Pediatrico
Piazza di Sant’Onofrio, 4, 00165 Roma RM, Italy
Medical Leads: Dr. Federico Vigevano and Dr. Michelina Armando, [email protected]
Primary Contact: [email protected]
Phone: 06 6859 2232
Fax: 06 6859 2463
Website
Policlinico Le Scotte
Viale Mario Bracci, 16, 53100 Siena SI, Italy
Medical Lead: Dr. Joussef Hayek, [email protected]
Primary Contact: [email protected]
Tel: 333 5616090
Fax: 577 585488
Website
Norway
Frambu kompetansesenter for sjeldne diagnoser
Sandbakkveien 18, 1404 Siggerud, Norway
Medical Lead: Kristian E. Kristoffersen
Primary Contact: [email protected]
Tel: 64 85 60 00
Website
Spain
Hospital Sant Joan de Déu
Institut d’Investigació i recerca Biomèdica de Bellvitge
Avinguda de la Granvia de l’Hospitalet, 199, 08908 L’Hospitalet de Llobregat, Barcelona, Spain
Medical Lead: Dr. Mercedes Pineda
Primary Contact: Dr. Mercedes Pineda
Tel: 34 93 600 97 83
Website
Hospital Universitario Niño Jesus in Madrid
Carrer del Bomber Ramon Duart, 21, 46013 València, Spain
Tel: 34 96 374 03 33
Website
Sweden
Nationellt Center för Rett syndrom och närliggande diagnoser
PO Box 601, SE-832 23 Frösön, Sweden
Primary contact: Marianne Olsson
Tel: 46 63 15 48 10
Fax: 46 63 15 45 00
Website
United Kingdom
Evelina London Children’s Hospital
St Thomas’ Hospital, Westminster Bridge Road, London SE1 7EH
Primary Contact: [email protected]
Tel: 020 7188 4003
Website
CIPP Rett Centre – Centre for Interventional Paediatric Pyschopharmacology
King’s College London-Addiction Sciences Building, 3rd Floor, PO86, 1-4 Winsor Walk, Denmark Hill, London, SE5 8BB
Medical Lead: Professor Paramala Santosh
Primary Contact: Rosie and Leighton at [email protected]
Website
Manchester Centre for Genomic Medicine
6th Saint Mary’s Hospital, Oxford Rd, Manchester M13 9WL
Medical Lead: Dr Catherine Breen
Tel: 0161 276 6206
Website