International Family Support Network & 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,* a comprehensive list of international groups and clinics.

* If you have new or updated information for this list, please contact us at natlfx@fragilex.org.


ARGENTINA

Parent Support: Asociacion X Fragil de Argentina

Primary contact person: María Silvia Garone
Tel: (54-11) 4313-1846
Email: x_fragil@yahoo.com.ar
Web: www.xfragil.com.ar
Facebook: www.facebook.com/pages/Sindrome-X-Fragil-Argentina/107826312575057

Clinic: Centro Nacional de Genética Médica – Buenos Aires

Liliana Alba, MD
A.N.L.I.S. “Dr. Carlos G. Malbrán”
Av. Las Heras 2670, 3°piso (1425)
Email: lalba56@yahoo.com.ar
Tel: 5411 4801-2326
Fax: 5411 4801-4428

AUSTRALIA

Parent Support and Clinic: Fragile X Alliance Inc.

Tel: (613) 9528 1910
Email: jcohen@travelclinic.com.au
Web: www.fragilex.com.au

Parent Support and Clinic: Fragile X Association of Australia

Tel: (612) 9977 0074
Fax: +61 2 9977 0074 (in Australia 1300 FX INFO)
Email: support@fragilex.org.au
Web: www.fragilex.org.au
Facebook: www.facebook.com/fxAus

BELGIUM

Parent Support: Werkgroep Fragiel – werkgroep rond ouders van kinderen met het Fragiele X-syndroom

Flemish Association: Supporting Parents of Children with Fragile X Syndrome
Email: mbaetens@belgacom.net
Web: fragiel.be/Fragiel%20website

Parent Support: Association X-fragile (Bruxelles – Wallonie)

Primary contact person: François Rycx (French, Dutch and English speaking)
Tel: +32 496 57 35 19
Email: info@x-fragile.be
Web: www.x-fragile.be
Facebook: www.facebook.com/AssociationXFragileBelgique
Facebook Group: www.facebook.com/groups/associationxfragile

Clinic: Center for Human Genetics

Prof. Dr. Hilde VAN ESCH
University Hospitals Leuven, Belgium
Tel: 0032-16-345903
Fax: 0032-16-346051
Web: www.uzleuven.be/pno/295031

BRASIL

Fundação Brasileira da Síndrome do X-Fragil

Tel: 00-55-51-3330-5617
Email: xfragil@zaz.com.br

Associação X Fragil do Brasil

Tel / Fax +55(11) 3501.1621
Email: xfragil@xfragil.org.br
Web: www.xfragil.org.br

CANADA

Fragile X Research Foundation of Canada

Tel: (905) 453-9366
Email: info@fragilexcanada.ca
Web: www.fragilexcanada.ca

Clinic Name: Vancouver Island, Canada British Columbia Fragile X Clinic

Division of Developmental Pediatrics and Provincial Medical Genetics Program
University of British Columbia Sunny Hill Health Centre for Children
Primary Contact Person: Elena Lopez, MD, MSc, FRCPC, FCCMG
Tel: (604)453-8300
Web: www.bcchildrens.ca/Services/SunnyHillHealthCtr

Clinic Name: Pediatric Fragile X Clinic: Edmonton, Alberta

Division of Developmental Pediatrics and Provincial Medical Genetics Program
Dept. of Pediatrics – Division of Pediatric Neurology – University of Alberta
Medical Director: Francois Bolduc MD FRCPC PhD
Primary Contact Person: Ronda Danchak
Tel: (780) 492-4425
Email: Ronda.Danchak@albertahealthservices.ca
Web: www.bcchildrens.ca/Services/SunnyHillHealthCtr

CZECH REPUBLIC

Fragilni X o.s.

Email: fragilnix@fragilnix.cz
Association Head: Jaroslava Berankova
Email: berankovaj@fragilnix.cz
Web: www.fragilnix.cz

CHILE

Parent Support: Corporacion X Fragil De Chile

Primary contact person: Carolina Diaz – Marcelo Gonzalez
Tel: 56-9-97444141 – 56-9-94691433
Email: contacto@xfragil.cl
Web: www.xfragil.cl
Facebook: Corporacion X Fragil Chile / Sindrome X-Fragil Chile

Parent Support: Agrupación de padres SXF de Chile

Primary contact person: Luz Maureira
Tel: 56-2-8559312

Clinic Name: Centro De Diagnostico, Tratamiento Y Seguimiento De Pacientes Con Sindrome X Frágil (Cdtsxf) Inta- U. De Chile

Primary contact person: Angelica Alliende
Tel: 56(2) 9781489-9781494
Email: malliend@inta.uchile.cl
Facebook: malliend@inta.cl
Web: www.xfragil.cl

CHINA

Parent Contact: Fanny Fan

Email: 411329730@qq.com
Cell: 86–13694269232

Clinic: Fragile X Clinic

Dalian Municipal Friendship Hospital
Medical Director: Ying Liu
Clinic Coordinators: Ping Liu, Xiaohong Li, Mingqiao Song
Email: liuying99068@yahoo.com.cn
Tel: 011-86-13604113111
Fax: 011-86-82712325

DENMARK

Landsforeningen for Fragilt X Syndrom i Danmark

(National Association for Fragile X Syndrome in Denmark)
Web: www.fragiltx.dk

ESTONIA

University of Tartu

Department of Pediatrics
Institute of Molecular and Cell Biology
Helen Puusepp, MD
Tel: +372-7375034
Email: helen@ut.ee

EUROPEAN UNION

Web: www.fragilex.eu

FRANCE

MOSAÏQUES Association des “X Fragile”

Email: mosaiques@xfragile.org
Web: pagesperso-orange.fr/mosaiques-xfragile

Association Nationale du syndrome de l’X fragile

Web: www.xfra.org

GERMANY

Parent Support: Interessengemeinschaft Fragiles-X e.V.

Primary contact person: Antje Beckert
Tel: +49-381-29642375
Email: gs@frax.de
Web: www.frax.de

Clinic: Netzwerk Fragiles-X am UKT

Primary contact person: Dr. Ulrike Gaiser
Tel: +49-7071-29-84734
Email: netzwerk@frax.de
Web: www.medizin.uni-tuebingen.de/frax

GUATEMALA

Asociación Guatemalteca del Sindrome X-Fragil (en formación)

K.m. 16.5 carretera a El Salvador, L5, MzB Sector III.
Terravista. Fraijanes, Guatemala.
Tel: 502 5219 8949

HONG KONG

Fragile X Hong Kong

Primary contact: Michael & Helen Tozer
Tel: +852 8175 0002
Email: fragilexhk@gmail.com
Web: www.fragilexhk.org

INDIA

Parent Support: Fragile X Society – India

Primary contact: Shalini N. Kedia (Chairperson)
Tel: 91 22 66642151
Cell: 91 9820199092
Email: info@fragilex.in
Web: www.fragilex.in

Clinic: Fragile X Clinic

Ummeed Child Development Centre, Mumbai
Medical Director: Dr. Vibha Krishnamurthy
Email: clinic@fragilex.in
Web: www.fragilex.in

INDONESIA

Center for Developmental Disorder and Autism (CEDIA)/ Center for Biomedical Research (CEBIOR)

Primary contact: Prof. Sultana MH Faradz, MD, PhD
Gedung Serba Guna, 2nd floor
Faculty of Medicine Diponegoro University
Dr. Sutomo no. 14, Semarang 50232, Indonesia
Tel: +62-24-845 4714
Fax:+62-24-841 2311
Web: cebior.fk.undip.ac.id
Email: genetikaundip@indosat.net.id OR molcytogen@yahoo.com

IRELAND

Parent Support: Irish Fragile X Society

Primary contact: Maria Panza
Tel: +353 87 657 3089
Email: MariaPanza@hotmail.com
Web: www.fragilex-ireland.org
Facebook: www.facebook.com/groups/137361296294339

ISRAEL

Parent Support: Israeli Fragile X Association

Primary contact: Nira Roberts
Tel: 972-54-9798516
Email: exemp@yotvata.org

Clinic: The Weinberg Child Development Center

Edmond and Lilly Safra Children’s Hospital
Sheba Tel Hashomer, Israel
Director, Dr. Lidia Gabis
Voice: 972-3-5302236, 972-52-6667360
Fax: 972-3-5303184
Email: child.dev.center@gmail.com
Web: eng.sheba.co.il/440

ITALY

Associazione Italiana Sindrome X-Fragile Onlus

Tel: 011-841447
Email: info@xfragile.it
Web: www.xfragile.it

MEXICO

Bienvenido a Instituto X! Instituto de Autismo y Sindrome X Fragil en Mexico

Tel: 0 1 8 0 0 (9372445)
Web: ipao.com.mx/xfragil

NETHERLANDS (Holland)

Parent Support: Fragiele X Vereniging Nederland

Primary contact person: Yvonne Snelders
Phone: 0031 6 14 33 20 33
Email: info@fragielex.nl
Website: www.fragielex.nl

NEW ZEALAND

Parent Support and Clinic: Fragile X New Zealand

Primary contact person: Andrea Lee
Tel: 0064 3 546 6561
Local Freephone: 0508 938 0552
Email: nationalcoordinator@fragilex.org.nz
Web: www.fragilex.org.nz
Facebook: www.facebook.com/Fragilexnewzealand

NORWAY

Norway: Foreningen for Fragilt X-syndrom

Web: www.frax.no

PORTUGAL

Associacao Portuguesa da Sindrome do X Fragil – Portugal

Tel: 351 21 485 03 62
Fax: 351 21 485 03 62
Email: ntbastos@mail.telepac.pt
Web: www.apsxf.org

ROMANIA

Parent Contact: Ruxandra Popa

Email: ruxandra_popa2003@yahoo.com

SAUDI ARABIA

Parent and Professional Contact: Osama Alswailem, MD MA

King Faisal Specialist Hospital & Research Center
Tel. +966 1 442 4680/ +966 1 4427814

SOUTH AFRICA

Parent Contact: Gwen Hedges

Email: gwen@hedge.co.za

SPAIN

Parent Support: Spanish Federation of Fragile X Syndrome

Email: xfragil@nova.es
Web: www.nova.es/xfragil

Parent Support and Clinic: Associació Catalana Síndrome X fràgil

Primary contact person: Mercè Bellavista
Phone:+342170939
Email: info@xfragil.cat / kgarcia@xfragil.cat
Web: www.xfragil.cat

Parent Support: ASXFAR (Asociación SXF Aragón)

Primary contact person: Mª Pilar Burillo
Tel: +34 976-525573
Email: rescribanog@ono.com
Web: www.xfragil.org

Clinic: Consulta de Genética Clínica – Hospital Clínico Universitario “Lozano Blesa”, Zaragoza –

Primary contact person: Feliciano J. Ramos, MD, PhD
Tel: +34 976-761739
Email: framos@unizar.es
Web: www.hcuz.es

SWEDEN

Sweden: Fraxa Sweden

Email: info@fragilex.se
Web: www.fragilex.se

SWITZERLAND

Association X Fragile Suisse

Email: associationxfragile@romandie.com
Web: www.x-fragile.ch/main.html?src=%2Findex2.html

TAIWAN

Taiwan Fragile X Association

Tel: 886-2-27680802.
Email: tcdac@gsn.gov.tw

THAILAND

Clinic: Child Development Clinic, Songklanagarind Hospital, Prince of Songkla University, Hatyai, Songkhla, Thailand

Primary contact person: Ms. Tippawan Deungchu & Dr. Juthamas Wirojanan, MD
Tel: (66)074-451254, (66)074-451758
Email: wjuthamas@yahoo.com

TURKEY

Tomurcuk Education, Culture and Solidarity Foundation

Tel: +00 90 532 232 14 36
Email: info@tomurcukvakfi.org
Web: www.tomurcukvakfi.org

UNITED ARAB EMIRATES

Khaled Amiri, PhD

Tel (9713)7614064
Fax (9713)7614045
Mobile (97150)6248523
Email: k.amiri@uaeu.ac.ae

UNITED KINGDOM

Parent Support: The Fragile X Society – United Kingdom

Primary contact person: Tim Potter
Tel: 00 44 (0) 1371 875100
Email: info@fragilex.org.uk
Web: www.fragilex.org.uk

UNITED STATES OF AMERICA

Parent Support: National Fragile X Foundation (NFXF)

1615 Bonanza Street, Suite 202
Walnut Creek, CA 94596
PH: (925) 938-9300 or (800) 688-8765
Fax: (925) 938-9315
Email: natlfx@fragilex.org
Web: www.fragilex.org
Facebook: www.facebook.com/natlfragilex

Clinics: Fragile X Clinical & Research Consortium (FXCRC)

Web: www.fragilex.org/treatment-intervention/fragile-x-clinics

URUGUAY

Parent Support: Asociacion X Fragil del Uruguay

Primary contact person: Daniela Sniadower
Tel: +598 9964 3302
Email: xFragilUruguay@gmail.com
Facebook: www.facebook.com/Sindrome.X.Fragil.Uruguay

Clinic: Clínica Síndrome X Frágil Uruguay

Primary contact person: Daniela Sniadower
Tel: +598 2622 4711
Email: xFragilUruguay@gmail.com
Facebook: www.facebook.com/Clinica.Sindrome.X.Fragil