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 15 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
- Increase understanding of Rett syndrome by contributing to a clinical registry
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 contact the Rett clinic directly to schedule an appointment and discuss payment options and insurance coverage.
Alabama
Rett Clinic and Research Center-Sparks Clinics
University of Alabama
1720 2nd Ave S., CH19 307, Birmingham, AL 35205
Medical Lead: Dr. Alan Percy
Primary Contact: Jane Lane, RN, BSN [email protected]
Tel: 800 822 2472 Ext. 7
Fax: 205 975 2380
California
Katie’s Clinic for Rett Syndrome and Related Disorders
UCSF Benioff Children’s Hospital Oakland
744 52nd St, Oakland, CA 94609
Medical Lead: Dr. Mary Jones
Primary Contact: Diane Matlock [email protected]
Tel: 510 595 5458
Fax: 925 979 4059
USC UCEDD-Rett Syndrome Clinic
Children’s Hospital Los Angeles
3250 Wilshire Blvd., 5th floor, Los Angeles, 90010
Medical Lead: Kathryn Smith, RN, DrPH
Primary Contact: Kathryn Smith, RN, DrPH [email protected]
Tel: 323 361 8301
Fax: 323 361 8305
Rett Syndrome Clinic-Rady’s Children’s Hospital
Medical Office Building, 4th Floor, North, 3030 Children’s Way , San Diego, CA 92123
Medical Lead: Dr. Richard Haas
Tel: 858 966 5819
Fax: 858 966 4930
Colorado
Rett Syndrome Clinic-Children’s Hospital Colorado
13123 E. 16th Ave. B-155, Aurora CO 80045
Medical Lead: Dr. Tim Benke
Primary Contact: Tristen Dinkel [email protected]
Tel: 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
Medical Lead: Dr. Daniel Tarquinio
Primary Contacts: Gina McClain [email protected] and Alice Bruce [email protected]
Tel: 617 894 9091
Fax: 770 200 1693
Illinois
Rett Syndrome Clinic-Rush University Medical Center
1725 W. Harrison St.,Suite 710, Chicago, IL 60612
Medical Leads: Dr. Peter Heydemann and Dr. Colleen Burhfiend
Primary Contact: Dr. Peter Heydemann
Tel: 312 942 3034
Maryland
Rett Syndrome Clinic-Kennedy Krieger Institute
801 N Broadway, Baltimore, MD 21205
Medical Lead: Dr. Connie Smith-Hicks
Primary Contact: Barbara Bradford
Tel: 888 554 2080, Ext. 2778 or 443 923 9400
Massachusetts
Rett Syndrome Program-Children’s Hospital Boston
Boston Children’s Hospital/Harvard Medical School
300 Longwood Avenue, Fegan 11,Boston, MA 02115
Medical Lead: Dr. David Lieberman
Primary Contact: [email protected]
Tel: 617 355 6388
Minnesota
Rett Syndrome Services-Phalen Clinic
Gillette Children’s Hospital
435 Phalen Blvd, St. Paul, MN 55130
Medical Leads: Dr. Tim Feyma, Dr. Art Beisang (Pediatrics) and Dr. Jill Gettings (Adults)
Tel: 651 290 8707
Missouri
Rett Syndrome and Related Spectrum Disorders Clinic
Washington University in St. Louis Children’s Hospital
4444 Forest Park Avenue, Suite 2600, St. Louis, MO 63108
Medical Leads: Dr. Robin Ryther and Dr. Judy Weisenberg
Care Coordinator: Wendy Sanders [email protected]
Tel: 800 678 5437
Fax: 314 454 4225
New York
Tri-State Rett Syndrome Center
Children’s Hospital at Montefiore
3415 Bainbridge Ave, Bronx, NY 10467
Medical Lead: Dr. Aleksandra Djukic
Primary Contact: [email protected]
Tel: 718 920 4378
Fax: 718 654 8078
Rett Syndrome Clinic-University of Rochester Medical Center
Neurology and Neurogenetics Department
919 Westfall Road, Clinton Crossings Bldg C, Suite 220, Rochester, NY 14618
Medical Leads: Dr. Alex Paciorkowski and Dr. Laurie Seltzer
Tel: 585 275 2808
Ohio
Rett Syndrome Clinic-Cincinnati Children’s Hospital
3333 Burnet Ave, Cincinnati, OH 45229
Medical Lead: Dr. Shannon Standridge
Primary Contact: Andrea Gonnella [email protected]
Tel: 513 636 4222
Oregon
Child Development and Rehabilitation Center
Doernbecher Children’s Hospital
700 S.W. Campus Drive, Portland, OR 97239
Medical Lead: Dr. Amelia Roth
Primary Contact: Liz Dobbs [email protected]
Tel: 503 346 0640
Pennsylvania
Buerger Center for Advanced Pediatric Care
Children’s Hospital of Philadelphia
3500 Civic Center Blvd, Philadelphia, PA 19104
Medical Lead: Dr. Eric Marsh
Tel: 215 590 1000
South Carolina
Greenwood Genetic Center
106 Gregor Mendel Cir, Greenwood, SC 29646
Medical Lead: Dr. Steve Skinner
Primary Contact: Fran Annese, LMSW [email protected]
Tel: 864-941-8100 or 888-442-4363
Tennesse
Rett Syndrome and Related Disorders Research Program
Vanderbilt Kennedy Center
110 Magnolia Circle, Nashville, TN 37203
Medical Lead: Dr. Jeffrey Neul
Primary Contacts: Dr. Sarika Peters and Dr. Cary Fu [email protected]
Tel: 615 875 9311
Texas
The Blue Bird Circle Rett Center
Texas Children’s Hospital
6701 Fannin St., CC1250, Houston, TX 77030
Medical Leads: Dr. Daniel G. Glaze and Dr. Bernhard Suter
Primary Contact: [email protected]
Tel: 888 430 7388
Fax: 832 825 7388
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
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
