International Family Support Network & Clinics

///International Family Support Network & Clinics
International Family Support Network & Clinics 2019-05-31T11:21:05+00:00

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,* a comprehensive list of international groups and clinics.

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


International Family Support and Clinics

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.sindromexfragil.com.ar
Facebook: www.facebook.com/pages/Sindrome-X-Fragil-Argentina/107826312575057

Australia

Parent Support and Clinic: Fragile X Association of Australia

Tel: (612) 9977 2366 / Phone call at local rates:  1300 394 636
Email: support@fragilex.org.au
Web: www.fragilex.org.au
Facebook: www.facebook.com/fxAus

Parent Support and Clinic: Fragile X Alliance Inc.

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

Belgium

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
Email: hilde.vanesch@uzleuven.be
Web: www.uzleuven.be/pno/295031

Canada

Clinic: Canada British Columbia Fragile X Clinic, Vancouver B.C.

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

Clinical: Carlo Paribello M.S.M., MD

President, Medical Director
Fragile X Research Foundation of Canada
Email: medical@fragilexcanada.ca
Tel: (905) 453-9366
Fax: (905) 453-0095
167 Queen St. W.
Brampton, Ontario
Canada L6Y 1M5

Chile

Parent Support: Corporacion X Fragil De Chile

Primary contact person: Carolina Diaz / Patricia Vergara
Tel: 56-9-97444141 / 56-9-78566770
Email: contacto@xfragil.cl
Web: www.xfragil.cl
Facebook: https://www.facebook.com/CorporacionXFragilChile/

Clinic: Centro de Diagnostico, Tratamiento y Seguimiento de Pacientes con Síndrome X Frágil (CDTSXF)

INTA University of Chile
Primary contact person: Dr. Ángela Pugin
Tel: +56 9 9997 4676
Email: angelapugin@yahoo.com
Facebook: https://www.facebook.com/CorporacionXFragilChile.cl
Web: www.xfragil.cl

Colombia

Parent Support: Asociación X Frágil Colombia

Primary Contact Person: Joanne Latore
Tel: Whatsapp: +57 310 8000599
Email: info@xfragilcolombia.org
Web: http://xfragilcolombia.org/
Facebook: https://www.facebook.com/FundacionXFragilColombia/

Clinic: Instituto de Genética Humana

Primary Contact Person: Wilmar Saldarriaga Gil, MD
Medical Director: Carolina Isaza de Lourido
Email: wilmar.saldarriaga@correounivalle.edu.co
Tel: 00573182800698

Denmark

Parent Support: Landsforeningen for Fragilt X Syndrom i Danmark

Web: www.fragiltx.dk

Clinic: Kennedy Center

Department of Clinical Genetics
Genetisk rådgivningsklinik
Gl. Landevej 7
DK-2600 Glostrup, Denmark
Tina Duelund Hjortshøj, MD, PhD
Direct: +45 29 20 48 17
Email: tina.duelund.hjortshoej@regionh.dk
Tel: +45 43 26 01 00
Web: www.rigshospitalet.dk/kgk
Kennedy Centret is a part of Diagnostic Centre, Rigshospitalet<

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

India

Parent Support: Fragile X Society of 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

Name of Clinic: Ummeed Fragile X Clinic
Name of Institution: Ummeed Child Development Center
Address: 1B, 1/52, Ground Floor, Mantri Pride, Lower Parel, Mumbai
Medical Director: Dr Roopa Srinivasan
Clinic Coordinator: Ms Aditi Jha
Email: aditi.jha@ummeed.org
Tel: 022-62488100
Web: www.ummeed.org

Indonesia

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

Primary contact: Prof. Sultana MH Faradz, MD, PhD
Central Laboratory 2nd floor
RSND University Hospital
Faculty of Medicine Diponegoro University
Dr. Sutomo no. 14, Semarang 50232, Indonesia
Tel: +62-24-845 4714
Email: molcytogen@yahoo.com
Web: http://inashg.org

Ireland

Parent Support: Irish Fragile X Society

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

Israel

Parent Support: The National Fragile X Association of Israel

Chair lady : Sharon Glasner, adv
Tel: 972-1700708043
Cell: 972-506840450
Email: xshavir@gmail.com
Web: www.xshavir.org.il
Facebook: @fragileXisrael (עמותת האיקס השביר בישראל)

Italy

Parent Support: Associazione Italiana Sindrome X-Fragile

Web: https://www.xfragile.net/

Clinic: Rete Multidisciplinare X Fragile Padova

Name of Institution: Università-Azienda ospedaliera di Padova
Address: Via Giustiniani 2, 35128 Padova
Medical Director: Prof. Alessandra Murgia
Clinic Coordinator: Dr. Marco Ricca
Email: alessandra.murgia@unipd.it
Tel: +39 049 8211430
Web: http://www.sdb.unipd.it/centro-x-fragile

Lesotho

Parent Contact: Sandrah Fraser

Email: sfraser@ilesotho.com
Facebook: https://www.facebook.com/groups/4819683185/

Mexico

Clinic: Centro de Investigaciones “Dr. Hideyo Noguchi”  (Mérida, Yucatan)

Primary contacts: Dr. Doris Pinto, Dr. Silvina Contreras, Dr. Zacil Vilchis
Phone: 9995932994
Email: genetica.yucatan@hotmail.com

Clinic:

Star Médica Hospital (Mérida, Yucatan)

Primary contact: Dr. Felix Campos
Phone: 9993701913
Email: felixcampos@gmail.com

Morocco

Parents contact: Dr. Roudani Leila

Email: roudanileila@gmail.com
Facebook: https://www.facebook.com/parents.xfragil.3

Netherlands (Holland)

Parent Support:

Fragiele X Vereniging Nederland

Primary contact person: Hanneke van der Heijden, secretariaat
Phone: 0031 6 14 33 20 33
Email: info@fragielex.nl
Website: www.fragielex.nl

New Zealand

Parent Support and Clinics:

Fragile X New Zealand

Primary contact person: Andrea Lee
Tel: 0064 210446299
Local Freephone: 0508 938 0552
Email: andrea@fragilex.org.nz
Web: www.fragilex.org.nz
Facebook: www.facebook.com/Fragilexnewzealand

Norway

Parent Support: Foreningen for Fragilt X-Syndrom

Web: www.frax.no

Philippines

Clinic: MedMom Institute for Human Development

Address: 2nd Floor FunRanch Mall Ortigas Ave., Ortigas East, Pasig City, Philippines 1600
Medical Director: Lourdes (Tippy) Sumpaico-Tanchanco, MD
Clinic Coordinator: Angel Belle Dy, MD
Email: administrator@med-mom.com
Tel: (+632)7270565
Web: www.med-mom.com

Poland

Parent Support: Fundacja “Rodzina Fra X”

Web: https://www.rodzinafrax.pl/
Facebook: https://www.facebook.com/FundacjaRodzinaFRAX/

Portugal

Parent Support: Associacão Portuguesa da Síndrome do X Frágil

Primary Contact: Maria Manuel Parrinha
Tel: 351 21 456 21 90
Mobile Phone:  351 967 271 404
Email: geral@apsxf.org
Web: www.apsxf.org
Facebook: https://www.facebook.com/APSXF-Associação-Portuguesa-da-Síndrome-do-X-Frágil-120863749868/

Serbia

Clinic: Neurology Department Pediatric Clinic

School of Medicine, University of Belgrade, Institute for Mother and Child Healthcare of Serbia
Address: Radoje Dakic St 6, 11070 Belgrade, Serbia
Medical Director: Radoje Simic MD PhD
Clinic Coordinator: Mirjana
Email:direktor@imd.org.rs

South Africa

Parent Contact: Gwen Hedges

Email: gwen@hedge.co.za

Alternate parent contact including for Lesotho

Sandrah Fraser
Email: sfraser@ilesotho.com
Facebook: https://www.facebook.com/groups/4819683185/

Spain

Parent Support: Spanish Federation of Fragile X Syndrome

The Spanish Federation of Fragile X syndrome is composed of multiple associations throughout the country.
Web: www.xfragil.org/

Parent Support and Clinic: Associació Catalana Síndrome X fràgil

Web: www.xfragil.cat

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

Primary contact person: Feliciano J. Ramos, MD, PhD
Tel: +34 976-556400 Ext. x4041
Email: framos@unizar.es
Web: www.hcuz.es

Clinic Regional University Hospital of Malaga

Psychiatric Service or Neuropediatric Service
Address: UGC Salud Mental. Hospital Civil. Pabellon 2. Bajo. 29009 Málaga. Spain.
Medical Director: Lucía Pérez-Costillas. MD.PhD. Psychiatrist and Rocío Calvo-Medina MD. PhD. Neuropediatrician.
Clinic Coordinator: Yolanda de Diego-Otero MSc. PhD. Geneticist
Email: ydediego@yahoo.es or  rrro@hotmail.com
Tel: +-34-658146062
Web: www.personasxpeciales.es

Switzerland

Parent Support: Fraxas: Association X Fragile Suisse

Primary Contact Person:

Kristin Mulcock
Tel: +41 076 509 79 03
Email: contact@fraxas.ch
Web: www.fraxas.ch
Facebook: https://www.facebook.com/fraxas/

Turkey

Clinic: Kanuni Eğitim Araştırma Hastanesi/ Trabzon

Training Hospital of Ministry of Health
Primary Contact: Dr. Onur Dursun
Email: onurburak007@yahoo.com
Web: https://trabzonkanunieah.saglik.gov.tr

United Kingdom

Parent Support: The Fragile X Society – United Kingdom

Tel: 00 44 (0) 1371 875100
Email: info@fragilex.org.uk
Web: www.fragilex.org.uk
Facebook: https://www.facebook.com/thefragilexsociety/

United States of America

Parent Support: National Fragile X Foundation (NFXF)

1861 International Drive Suite 200, McLean, VA 22102, (800) 688-8765
PH: 800-688-8765
Fax: 202-747-6208
Email: natlfx@fragilex.org
Web: fragilex.org
Facebook: www.facebook.com/natlfragilex

Clinics: Fragile X Clinical & Research Consortium (FXCRC)

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

Uruguay

Parent Support: Asociacion X Fragil del Uruguay

Facebook: www.facebook.com/Sindrome.X.Fragil.Uruguay

Clinic:Clínica Síndrome X Frágil Uruguay

Facebook: www.facebook.com/Clinica.Sindrome.X.Fragil