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 and other related advocacy groups. We highly encourage families to enroll to help with research towards finding a cure.




Dr. Alan Percy
Director, Rett Clinic and Research Center
University of Alabama – Sparks Clinics
1720 2nd Avenue South, CIRC 320E, Birmingham, AL 35294
Rett ConsortiumContact: Jane Lane, RN, BSN 800-822-2472, Ext 7
Fax: 1-205-975-2380

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Benioff Children's Hospitals

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
Rett ConsortiumContact: Diane Matlock
Phone: 510-595-5458
Fax: 925-979-4059

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Children's Hospital Los Angeles

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 –
Phone: 323-361-8301
Fax: 1-323-361-8305

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Rady Childrens Hospital San Diego

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
Rett ConsortiumFor appointments call: 858-966-5819
Fax: 858-966-4930

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Children's Hospital 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
Phone: 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
Director: Dr. Daniel Tarquinio
Clinic Contact: Gina McClain –
Research Director: Alice Bruce –
Phone: 617-984-9091
Fax: 770-200-1693

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Rush University Medical Center

Rush University Medical Center

1725 W. Harrison St.
Suite 710
Chicago, IL 60612
Directors: Dr. Peter Heydemann & Dr. Colleen Burhfiend
Rett Consortium
For Appointments Phone: (312) 942-3034

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Kennedy Krieger Institute

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

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Boston Children's Hospital

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
Rett Consortium
Ph. 617-355-6388; F. 617-730-0279

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Gillette Children's Specialty Healthcare

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
Rett Consortium 651-290-8707

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Children's Hospital St. Louis

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
Rett ConsortiumSaint Louis, Missouri 63110
Coordinator: Wendy Sanders –
Information: 1-800-678-5437
Fax: 1-314-454-4225

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New York

The Children's Hospital at Montefiore

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

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University of Rochester Medical Center

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


Cincinnati Children's

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
Rett ConsortiumContact:
For appointments call: 513-636-4222

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Oregon Health & Science University

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
Information: 503-494-8311

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The Children's Hospital of Philadelphia

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
Rett ConsortiumPhiladelphia, PA 19104
Contact 215-590-1719 and follow prompts Neurogenetics

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South Carolina

Greenwood Genetic Center

Greenwood Genetic Center

Dr. Steve Skinner
Director, Greenwood Genetic Center
106 Gregor Mendel Circle
Greenwood, SC 29646
Rett ConsortiumContact: Kimberly Ivery, LPN (Peds)
1-864-240-3146 or or 1-888-442-4363 (Adults)

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Vanderbilt Kennedy Center

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
Rett ConsortiumContact: 615-875-9311

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Texas Children's Hospital

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
Rett ConsortiumHouston, TX 77030
Fax: 832-825-7388

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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:
Tel: 1300 366 039
Fax: 07 3068 5126

Royal Children’s Hospital, Melbourne

50 Flemington Road, Parkville Victoria, Australia 3052
Primary Contact:
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:
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,
Primary Contact:


Kennedy Centret, Rigshospitalet

Clinical Genetic Clinic – Kennedy Center
Gamle Landevej 7, Glostrup 2600, Denmark
Medical Lead: Anne-Marie Bisgaard Pedersen, MD PhD
Primary Contact:
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:
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:
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:
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,
Primary Contact:
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,
Primary Contact:
Phone: 06 6859 2232
Fax: 06 6859 2463

Policlinico Le Scotte

Viale Mario Bracci, 16, 53100 Siena SI, Italy
Medical Lead: Dr. Joussef Hayek,
Primary Contact:
Tel: 333 5616090
Fax: 577 585488


Frambu kompetansesenter for sjeldne diagnoser

Sandbakkveien 18, 1404 Siggerud, Norway
Medical Lead: Kristian E. Kristoffersen
Primary Contact:
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:
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