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.



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

Rett Consortium

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Benioff Children's Hospitals

Katie’s Clinic for Rett Syndrome and Related Disorders

UCSF Benioff Children’s Hospital Oakland
744 52nd St, Oakland, CA 94609
Medical Lead: Jennifer Martell Tu, MD, PhD
Primary Contact: Diane Matlock [email protected]
Tel: 510 595 5458
Fax: 925 979 4059
Rett Consortium

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Children's Hospital 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
Rett Consortium

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Center for Rare Neurological Diseases

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

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Rush University Medical Center

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
Rett Consortium

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Kennedy Krieger Institute

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

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Boston Children's Hospital

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

Rett Consortium

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Gillette Children's Specialty Healthcare

Rett Syndrome Services-Phalen Clinic

Gillette Children’s Hospital
435 Phalen Blvd, St. Paul, MN 55130
Medical Leads: Dr. Art Beisang (Pediatrics) and Dr. Jill Gettings (Adults)
Tel: 651 290 8707

Rett Consortium

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Children's Hospital St. Louis

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

Rett Consortium

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New York

The Children's Hospital at Montefiore

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

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The Children's Hospital of Philadelphia

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

Rett Consortium

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South Carolina

Greenwood Genetic Center

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

Rett Consortium

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Vanderbilt Kennedy Center

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

Rett Consortium

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Texas Children's Hospital

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

Rett Consortium

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University of Texas Southwestern

University of Texas Southwestern together with Children’s Health Dallas

Rett Syndrome and Related Disorders Clinic
2350 N Stemmons Fwy, Unit F5400, Dallas, TX 75207
Medical Lead: Dallas Armstrong, M.D.
Clinic Coordinator: Christa Minor
Primary Contact: [email protected]
Tel: 214 456 2768

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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

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Rady Childrens Hospital San Diego

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

Rett Consortium

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New York

University of Rochester Medical Center

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

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Cincinnati Children's

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

Rett Consortium

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Oregon Health & Science University

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

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North America


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

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

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

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



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

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

Royal Children’s Hospital, Melbourne

50 Flemington Road, Parkville Victoria, Australia 3052
Primary Contact: [email protected]
Tel: 61 3 9345 5898


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



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]


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


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

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


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


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


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


Istituto Giannina Gaslini

Via Gerolamo Gaslini, 5, 16147 Genoa Italy
Medical Lead: Prof. Edvige Veneselli
Primary Contact: Dr. Maria Traverso
Tel: 339 2712005

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

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

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


Frambu kompetansesenter for sjeldne diagnoser

Sandbakkveien 18, 1404 Siggerud, Norway
Medical Lead: Kristian E. Kristoffersen
Primary Contact: [email protected]
Tel: 64 85 60 00


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


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

United Kingdom

Evelina London Children’s Hospital

St Thomas’ Hospital, Westminster Bridge Road, London SE1 7EH
Primary Contact: [email protected]
Tel: 020 7188 4003

Manchester Centre for Genomic Medicine

6th Saint Mary’s Hospital, Oxford Rd, Manchester M13 9WL
Medical Lead: Dr Catherine Breen
Tel: 0161 276 6206