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
1720 2nd Avenue South, CIRC 320E, Birmingham, AL 35294
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 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: CDPAccessService@health.qld.gov.au
Tel: 1300 366 039
Fax: 07 3068 5126
Website
Royal Children’s Hospital, Melbourne
50 Flemington Road, Parkville Victoria, Australia 3052
Primary Contact: neurodev@rch.org.au
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: ynomura@wind.ocn.ne.jp
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, kboztug@cemm.oeaw.ac.at
Primary Contact: cerud@meduniwien.ac.at
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: anne-marie.bisgaard.pedersen@regionh.dk
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: abeatrice.de-lisle@aphp.fr
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: info@klinikum-kassel.de
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: polikliniek.klinischegenetica@mumc.nl
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, gdirosa@unime.it
Primary Contact: neuropsichiatria.infantile@polime.it
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, michelina.armando@opbg.net
Primary Contact: psp.neurologia@opbg.net
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, j.hayek@ao-siena.toscana.it
Primary Contact: accogl@ao-siena.toscana.it
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: info@frambu.no
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
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: PaediatricAppointmentsNeurology@gstt.nhs.uk
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