International Family Support Network and Clinics
The National Fragile X Foundation is committed to spreading the word about Fragile X-associated disorders and to seeing that all people in all countries benefit from the best available treatments. Since 1984, we have taken the lead in fostering worldwide Fragile X communication. Part of that commitment has been to maintain a listing of Parent Support contacts and groups throughout the world. Beginning in 2010, we added international affiliates to the Fragile X Clinical & Research Consortium. The following is, to the best of our knowledge (if you have new or updated information for this list, please contact us at contact@fragilex.org), a comprehensive list of international groups and clinics. Please also visit Fragile X International!
More clinics: U.S. Clinics | FXTAS-Specific Clinics
LEGEND
Phone Numbers: All phone numbers use international format. Please note that some countries have different formats for landline vs. mobile.
Parent Support
Clinic
Argentina
Asociacion X Fragil de Argentina
Contact: María Silvia GaronePhone: +54 11 4313-1846
Email: x_fragil@yahoo.com.ar
CENAGEM – Centro Nacional De Genetica Medica
Las Heras 2670 3er Piso Genetica
Buenos Aires
Contact: Miguel Aguirre, MD, Medical
Phone: +54 11 4801-2326
Email: vlotersztein@yahoo.com.ar
Links: Website
Medical Director: Miguel Aguirre, MD
Clinic Coordinator: Vanesa Lotersztein e Isabel Luisa Valencia
Australia
Notes:
- Families in Melbourne (Victoria) seeking medical evaluation and treatment recommendations for children or adults with Fragile X syndrome should contact the Fragile X Alliance clinic (see below).
- Families in Brisbane (Queensland) seeking medical evaluation and treatment recommendations for children with Fragile X syndrome should contact Dr Honey Heussler, Medical Director of the Child Development Program at the Children’s Health Queensland Hospital and Health Service: +61 7 3068 1111, and ask for “Children’s Development Unit.”
- Families in other locations should contact the Fragile X Association of Australia (see below) for information about other clinic options for children or adults with Fragile X syndrome.
Fragile X Association of Australia
Phone: +61 2 9977 2366 (Local: 1300 394 636)
Email: support@fragilex.org.au
Belgium
Association X-Fragile
Bruxelles – Wallonie
Contact: François Rycx (French, Dutch and English speaking)
Phone: +32 496 57 35 19
Email: info@x-fragile.be
Links: Website | Facebook | Facebook Group
Center for Human Genetics
University Hospitals Leuven, Belgium
Contact: Prof. Dr. Hilde Van Esch
Email: hilde.vanesch@uzleuven.be
Links: Website
Brazil
Associação X Fragil do Brasil
Links: Website
Canada
Fragile X Foundation of Canada
PO Box 35076 Fleetwood Postal Outlet
Surrey BC
V4N 9E9
Email: info@fragilexcanada.ca
Links: Website
University of British Columbia Sunny Hill Health Centre for Children
Division of Developmental Pediatrics and Provincial Medical Genetics Program
Contact: Dr. Elena Lopez
Phone: +1 604-453-8300
Links: Website
University of Alberta — Stollery Children’s Hospital
Unit 2E Pediatric Ambulatory Clinic
8440 112 St NW
Edmonton, AB T6G 2B7
Clinic & Medical Director: Dr. Francois Bolduc
Contact: Ms. Kerri Whitlock, Clinic Coordinator
Phone: +1 780-492-7034
Email: kerri.whitlock@albertahealthservices.ca
Links: Website
Chile
Corporacion X Fragil De Chile
Division of Developmental Pediatrics and Provincial Medical Genetics Program
Contacts:
Carolina Diaz +56 9 9744 4141
Patricia Vergara +56 9 7856 6770
Email: contacto@xfragil.cl
Centro de Diagnostico, Tratamiento y Seguimiento de Pacientes con Síndrome X Frágil (CDTSXF)
INTA University of Chile
Contact: Dr. Ángela Pugin
Phone: +56 9 9997 4676
Email: angelapugin@yahoo.com
China
Children’s Hospital of Fudan University
Fragile X Syndrome Clinic
NO.399 Wanyuan Rd, Shanghai, China
Ages Seen: 0-35 years
Clinic Director: Dr. Qiong Xu
Contact: Yiting Zhu, Clinic Coordinator
Email: fudanfxs@163.com
Phone/Scheduling Appointments: 0086-13162365629
Links: Website
WeChat Group
Fragile X syndrome families and doctors in China have established an online WeChat group where they can exchange information and experiences. Please contact Dr. Ying Han to learn about how you can join the group.
Contact: Ying Han, MD, PhD
Email: hanying1568@126.com
Links: WeChat Apps
Colombia
Asociación X Frágil Colombia
Contact: Joanne LatorePhone: +57 310 8000599
Email: info@xfragilcolombia.org
Universidad del Valle
Cali, ColombiaContact: Dr. Wilmar Saldarriaga Gil
Phone: 00573182800698
Email: wilmar.saldarriaga@correounivalle.edu.co
Medical Director:Wilmar Saldarriaga Gil
Links: Website
Denmark
Center for Fragile X Syndrome
Rigshospitalet
Department of Clinical Genetics
Blegdamsvej 9
Copenhagen, Denmark
Phone: +45 43 26 01 00
Contact: Dr. Bitten Schönewolf-Greulich
Phone: +45 29 20 48 50
Email: fragiltx.rigshospitalet@regionh.dk
Links: Website
Ecuador
Neurodesarrollo Quito
Elías Sinalín y pasaje privado lote #3
Quito, Ecuador
Clinic Director: Jenniffer Villarreal
Clinic Coordinator: Graciela Oña
Phone: +45 29 20 48 50
Email: neurodesarrolloquito@gmail.com
Links: Website
France
MOSAÏQUES Association des “X Fragile”
Links: Website
Association Nationale Syndrome X Fragile & Maladies Associees
Phone: +33 4 69 67 94 58Links: Website
Germany
Interessengemeinschaft Fragiles-X e.V.
Contact: Antje BeckertPhone: +49 381 29642375
Email: gs@frax.de
Links: Website
Netzwerk Fragiles-X am UKT
Contact: Dr. Ulrike GaiserPhone: +49 7071 2984734
Email: netzwerk@frax.de
Links: Website
Georgia
Fragile X Center
MediClubGeorgia Medical Center, Tbilisi, Georgia
Medical Director: Dr. Gia Melikishvili
Clinic Coordinator: Dr. Nazhi Tabatadze
Phone: +995 59721444
Email: fragilexsyndromegeorgia@gmail.com
India
Fragile X Society of India
Chairperson: Shalini N. KediaPhone: +91 22 6664 2151
Cell: +91 98201 99092
Email: info@fragilex.in
Links: Website
Ummeed Child Development Center
Ground Floor, Mantri Pride 1-B, 1/62, N.M.
Joshi Marg, Subhash Nagar,
Lower Parel, Mumbai 400 011
Medical Director: Dr. Roopa Srinivasan
Clinic Coordinator: Ms. Aditi Jha
Phone: +91 22 6248 8100
Email: aditi.jha@ummeed.org
Links: Website
Indonesia
Center for Developmental Disorder and Autism (CEDIA)/ Center for Biomedical Research (CEBIOR)
Central Laboratory 2nd floor
Genetic Clinic of National Diponegoro University Hospital
Faculty of Medicine Diponegoro University
Prof. Soedarto Street no1, Semarang 50275, Indonesia
Contact: Dr. Agustini Utari
Phone: +62 24 8454714
Email: agustiniutari@gmail.com
Ireland
Irish Fragile X Society
Contact: Maria PanzaPhone: +353 87 657 3089
Email: MariaPanza@hotmail.com
Links: Website | Facebook Group
Israel
The National Fragile X Association of Israel
Chair: Sharon GlasnerPhone: +972 1-700-708-043
Cell: +972 50-684-0450
Email: xshavir@gmail.com
Links: Website | Facebook | Facebook Group
Italy
Associazione Italiana Sindrome X-Fragile
Links: WebsiteRete Multidisciplinare X Fragile Padova
Università-Azienda ospedaliera di Padova
Via Giustiniani 2, 35128 Padova
Medical Director: Prof. Alessandra Murgia
Clinic Coordinator: Dr. Marco Ricca
Phone: +39 049 821 1430
Email: alessandra.murgia@unipd.it
Links: Website
Ospedale Pediatrico Bambino Gesù
UOC Neuropsichiatria dell’Infanzia e dell’Adolescenza
Viale Ferdinando Baldelli 41, 00146, Roma, Italy
Medical Director: Prof. Stefano Vicari
Clinic Psychologist: Dr. Alice Montanaro
Email: federica.montanaro@opbg.net
Clinic Coordinator: Dr. Paolo Alfieri
Email: paolo.alfieri@opbg.net
Phone: +39 066 859 4721 or +39 066 959 2735
Links: Website
Japan
For general information, including online events with lectures from experts and family/patient interaction, or other parent or professional support, please visit the Department of Gene Discovery, Support Center for Biofunction Research, Tottori University, and complete the contact form.
Other Fragile X informational sites in Japan:
From Tottori University Research
Link: Website
From Kobe University
Link: Website
Lesotho
Fragile X South Africa
Parent Contact: Sandrah FraserEmail: sfraser@ilesotho.com
Links: Facebook Group
Mexico
Centro de Investigaciones “Dr. Hideyo Noguchi”
Mérida, Yucatan
Contacts:
Dr. Doris Pinto
Dr. Silvina Contreras
Dr. Zacil Vilchis
Phone: +52 999 593 2994
Links: Website
Star Médica Hospital
Mérida, Yucatan
Contact: Dr. Felix Campos
Phone: +52 999 370 1913
Email: felixcampos@gmail.com
Hospital Universitario de Nuevo León
Clínica de X frágil Monterrey
Monterrey, Mexico
Contact: Dr. Diana Villarreal
Phone: +81 83 338 623
Email: neurodesarrollohu@gmail.com
Website: https://www.facebook.com/profile.php?id=100090292903111
Netherlands
Fragiele X Vereniging Nederland
Parent Support: Hanneke van der Heijden, SecretariatPhone: +31 6 14332033
Email: info@fragielex.nl
Links: Website
New Zealand
Fragile X New Zealand
Contact: Andrea LeePhone: +64 210 446 299
Local Phone: +64 508 938 0552
Email: andrea@fragilex.org.nz
Norway
Foreningen for Fragilt X-Syndrom
Links: WebsitePhilippines
Ateneo Autism Study Group
Ateneo School of Medicine and Public Health — Center for Research and Innovations
Frontera Verde, Ortigas Avenue, Pasig City, Philippines
Don Eugenio Lopez Sr. Medical Complex
Ortigas Avenue, Pasig City
Phone: +632 8706 3086
Email: aasg.asmph@ateneo.edu
Poland
Portugal
Associacão Portuguesa da Síndrome do X Frágil
Contact: Maria Manuel ParrinhaPhone: +351 21 456 2190
Cell: +351 967 271 404
Email: geral@apsxf.org
Russia
Russia Fragile X
Contact: Tatiana Grigoryeva
Phone: +7 909 690 2124
Email: mail@fragilexsyndrome.ru
Links: Website | Facebook
Serbia
Special Hospital for Cerebral Palsy and Developmental Neurology
Sokobanjska 17a
Belgrade, Serbia
Medical Director: Dr. Danijela Bascarevic
Consulting Physician: Dr. Dragana Protic
Clinic Coordinator: Dr. Sanja Dimitrijevic
Website: https://sbcprn.com
Phone: +38163510304
Fragile X Society – BALKANS
Website: fragilexbalkans.org/en/
South Africa
Fragile X South Africa
Parent Contact: Gwen HedgesEmail: gwen@hedge.co.za
Alternate parent contact, including for Lesotho: Sandrah Fraser
Email: sfraser@ilesotho.com
Links: Facebook Group
Spain
Spanish Federation of Fragile X Syndrome
The Spanish Federation of Fragile X Syndrome is composed of multiple associations throughout the country.
Links: Website
Associació Catalana Síndrome X Fràgil
Links: WebsiteConsulta de Genética Clínica
Hospital Clínico Universitario “Lozano Blesa” de Zaragoza
Contact: Dr. Feliciano J. RamosPhone: +34 976 55 64 00 Ext. x4041
Email: framos@unizar.es
Links: Website
Regional University Hospital of Malaga
Psychiatric or Neuropediatric Service
UGC Salud Mental
Laboratorio de Investigación
Pabellon 6 sot. Hospital Civil
29009 Málaga
Spain
Medical Directors:
Dr. Lucía Pérez-Costillas, Psychiatrist
Dr. Rocío Calvo-Medina, Neuropediatrician
Clinic Coordinator: Yolanda de Diego-Otero, Geneticist
Email:
ydediego@yahoo.es
rrro@hotmail.com
Phone: +34 658 14 60 62
Links: Website
Corporació Sanitaria Parc Taulí (Parc Tauli Hospital)
Rare Diseases Department, Fragile X Syndrome Unit
Pza. Parc Taulí, 1
Sabadell
Barcelona, Spain
Medical Director & Clinic Coordinator: Dr. Ana Roche
Phone: +34 699 83 35 11 Ext. 21290 or +34 937 23 10 10 Ext. 21003
Email: ana.roche.mar@gmail.com
Links: Website
Sri Lanka
Children’s Discovery House
Occupational therapy and other services for children with special needs.
No. 651/25, Elvitigala Mawatha
Colombo 00500, Sri Lanka
Phone: +94 11 236 9713
Email: info@cdhcolombo.com
Links: Website
Switzerland
Fraxas: Association X Fragile Suisse
Parent Contact: Kristin MulcockPhone: +41 76 509 79 03
Email: contact@fraxas.ch
Turkey
Kanuni Eğitim Araştırma Hastanesi/ Trabzon
Training Hospital of Ministry of Health
Contact: Dr. Onur Dursun
Email: onurburak007@yahoo.com
Links: Website
United Kingdom
The Fragile X Society – United Kingdom
Phone: +44 1371 875100Email: info@fragilex.org.uk
Links: Website
United States
National Fragile X Foundation (NFXF)
1012 14th St. NW
Suite 500, Washington, DC 20005
(800) 688-8765
Phone: +1 800-688-8765
Email: contact@fragilex.org
Fragile X Clinical & Research Consortium (FXCRC)
Links: WebsiteUruguay
Asociacion X Fragil del Uruguay
Links: FacebookClinics
For assistance with finding appropriate clinical services in Uruguay, please contact:
Daniela Sniadower
Phone: +598 2622 4711
Email: xFragilUruguay@gmail.com
Links: Facebook: Clinica Sindrome X Fragil | Facebook: Sindrome X Fragile Uruguay
Also see: U.S. Clinics | Community Support Network | FXTAS-Specific Clinics