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. Clinics | Community Support Network | FXTAS-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

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

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
RSND University Hospital
Faculty of Medicine Diponegoro University
Dr. Sutomo no. 14, Semarang 50232, Indonesia

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

Lethoso

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
Email: genetica.yucatan@hotmail.com

Links: Website

Star Médica Hospital

Mérida, Yucatan

Contact: Dr. Felix Campos
Phone: +52 999 370 1913
Email: felixcampos@gmail.com

Links: Website

Morocco

Parents Xfragil

Parent Contact: Dr. Roudani Leila
Email: roudanileila@gmail.com

Links: Facebook

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

MedMom Institute for Human Development

2nd Floor Fun Ranch
Frontera Verde, Ortigas Avenue, Pasig City, Philippines

Medical Director: Dr. Lourdes (Tippy) Sumpaico-Tanchanco
Clinic Coordinator: Dr. Angel Belle Dy
Phone: +63 2 727 0565
Email: administrator@med-mom.com

Links: Website

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

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
Clinic Coordinator: Mirjana
Email: direktor@imd.org.rs

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

Clínica Síndrome X Frágil Uruguay

Links: Facebook