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.

Also see: U.S. ClinicsFXTAS-Specific Clinics

LEGEND

Phone Numbers: All phone numbers use international format.

Parent Support

 Clinic

Argentina

Asociacion X Fragil de Argentina

Contact: María Silvia Garone
Phone: +54 11 4313-1846
Email: x_fragil@yahoo.com.ar

Links: Website | Facebook

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

Links: Website | Facebook

Fragile X Alliance

Phone: +61 3 9528 1910
Email: jcohen@geneticclinic.com.au

Links: Website

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 Catarinense da Síndrome do X Frágil

Contact: Jaqueline Gratidão
Email: axferj@hotmail.com

Links: Website | Facebook | Email

Canada

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

Fragile X Research Foundation of Canada

167 Queen St. W.
Brampton, Ontario
Canada L6Y 1M5

President, Medical Director: Dr. Carlo Paribello
Phone: +1 905-453-9366
Fax: +1 905-453-0095
Email: medical@fragilexcanada.ca

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

Links: Website | Facebook

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

Links: Website | Facebook

Colombia

Asociación X Frágil Colombia

Contact: Joanne Latore
Phone: +57 310 8000599
Email: info@xfragilcolombia.org

Links: Website | Facebook

Instituto de Genética Humana

Contact: Dr. Wilmar Saldarriaga Gil
Phone: 00573182800698*
Email: wilmar.saldarriaga@correounivalle.edu.co
Medical Director: Carolina Isaza de Lourido

Links: Website

*We were given this phone number, however the formatting doesn’t match other Colombian phone numbers. The main phone number for the Instituto de Genetica Human is +57 1 3208320.

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

Germany

Interessengemeinschaft Fragiles-X e.V.

Contact: Antje Beckert
Phone: +49 381 29642375
Email: gs@frax.de

Links: Website

Netzwerk Fragiles-X am UKT

Contact: Dr. Ulrike Gaiser
Phone: +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: fragilexgeorgia@gmail.com

Fragile X Syndrome Georgia

Email: fragilexsyndromegeorgia@gmail.com

Links: Facebook

India

Fragile X Society of India

Chairperson: Shalini N. Kedia
Phone: +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 University Hospital
Faculty of Medicine Diponegoro University
Prof. Soedarto Street no1, Semarang 50275, Indonesia
Dr. Sutomo no. 14, Semarang 50232, Indonesia

Contact: Prof. Dr. Sultana MH Faradz
Phone: +62 24 8454714
Email: molcytogen@yahoo.com and sultanafaradz@gmail.com

Links: Website

Ireland

Irish Fragile X Society

Contact: Maria Panza
Phone: +353 87 657 3089
Email: MariaPanza@hotmail.com

Links: Website | Facebook Group

Israel

The National Fragile X Association of Israel

Chair: Sharon Glasner
Phone: +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: Website

Rete 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

Japan

There are currently no clinics or parent support organizations. These are informational only.

From Tottori University Research

Link: Website

From Kobe University

Link: Website

Lesotho

Fragile X South Africa

Parent Contact: Sandrah Fraser
Email: 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

Netherlands

Fragiele X Vereniging Nederland

Parent Support: Hanneke van der Heijden, Secretariat
Phone: +31 6 14332033
Email: info@fragielex.nl

Links: Website

New Zealand

Fragile X New Zealand

Contact: Andrea Lee
Phone: +64 210 446 299
Local Phone: +64 508 938 0552
Email: andrea@fragilex.org.nz

Links: Website | Facebook

Norway

Foreningen for Fragilt X-Syndrom

Links: Website

Philippines

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

Links: Website | Facebook

Poland

Fundacja “Rodzina Fra X”

Links: Website | Facebook

Portugal

Associacão Portuguesa da Síndrome do X Frágil

Contact: Maria Manuel Parrinha
Phone: +351 21 456 2190
Cell: +351 967 271 404
Email: geral@apsxf.org

Links: Website | Facebook

Russia

Russia Fragile X

Contact: Tatiana Grigoryeva
Phone: +7 909 690 2124
Email: mail@fragilexsyndrome.ru
LinksWebsite   | Facebook

Serbia

Neurology Department Pediatric Clinic

School of Medicine, University of Belgrade, Institute for Mother and Child Healthcare of Serbia

Radoje Dakic St 6, 11070
Belgrade, Serbia

Medical Director: Dr. Radoje Simic
Consulting Physician: Dr. Dragana Protic
Clinic Coordinator: Mirjana
Email: direktor@imd.org.rs

Fragile X Society – BALKANS

Website: fragilexbalkans.org/en/

South Africa

Fragile X South Africa

Parent Contact: Gwen Hedges
Email: 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: Website

Consulta de Genética Clínica
Hospital Clínico Universitario “Lozano Blesa” de Zaragoza

Contact: Dr. Feliciano J. Ramos
Phone: +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

Switzerland

Fraxas: Association X Fragile Suisse

Parent Contact: Kristin Mulcock
Phone: +41 76 509 79 03
Email: contact@fraxas.ch

Links: Website | Facebook

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 875100
Email: info@fragilex.org.uk

Links: Website | Facebook

United States

National Fragile X Foundation (NFXF)

1861 International Drive
Suite 200, McLean, VA 22102
(800) 688-8765

Phone: +1 800-688-8765
Fax: +1 202-747-6208
Email: natlfx@fragilex.org

Links: Website | Facebook

Fragile X Clinical & Research Consortium (FXCRC)

Links: Website

Uruguay

Asociacion X Fragil del Uruguay

Links: Facebook

Clinics

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