To the best of our knowledge, the following is 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.
A Note on Phone Numbers: All phone numbers use international format. Also, note that some countries have different formats for landline vs. mobile.
Argentina
Support Networks
➥ Asociacion X Fragil de Argentina
Contact:
+54 11 4313-1846
x_fragil@yahoo.com.ar
Staff:
María Silvia Garone
➥ CENAGEM – Centro Nacional De Genetica Medica
Las Heras 2670 3er Piso Genetica
Buenos Aires
Contact:
+54 11 4801-2326
vlotersztein@yahoo.com.ar (Vanesa Lotersztein e Isabel Luisa Valencia)
Staff:
Miguel Aguirre, MD, Medical Director
Vanesa Lotersztein e Isabel Luisa Valencia, Clinic Coordinator
Armenia
Clinics
➥ Genetic Forensic Center LLC
Genetic Diagnostic Clinic
12 Vagharshyan Street, 0012
Yerevan, Armenia
Contact:
+37 455365835
hovhannisyan@gencenter.am
Staff:
Hrant Stepanyan, Clinic Director
Anna Hovhannisyan, Clinic Coordinator
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 (in the listing 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 (in the listing below) for information about other clinic options for children or adults with Fragile X syndrome.
Support Networks
➥ Fragile X Association of Australia
Contact:
+61 2 9977 2366 (Local: 1300 394 636)
support@fragilex.org.au
Clinics
➥ Fragile X Alliance
Contact:
+61 3 9528 1910
jcohen@geneticclinic.com.au
Belgium
Support Networks
➥ Association X-Fragile
Bruxelles – Wallonie
Contact:
+32 496 57 35 19 (French, Dutch, and English speaking)
Staff:
François Rycx
Website | Facebook | Facebook Group
Clinics
➥ Center for Human Genetics
University Hospitals Leuven, Belgium
Contact:
hilde.vanesch@uzleuven.be (Dr. Hilde Van Esch)
Staff:
Prof. Dr. Hilde Van Esch
Brazil
Canada
Support Networks
➥ Fragile X Foundation of Canada
PO Box 35076 Fleetwood Postal Outlet
Surrey BC
V4N 9E9
Contact:
info@fragilexcanada.ca
Clinics
➥ University of British Columbia Sunny Hill Health Centre for Children
Division of Developmental Pediatrics and Provincial Medical Genetics Program
Contact:
+1 604-453-8300
Staff:
Dr. Elena Lopez
➥ University of Alberta — Stollery Children’s Hospital
Unit 2E Pediatric Ambulatory Clinic
8440 112 St NW
Edmonton, AB T6G 2B7
Contact:
+1 780-492-7034
kerri.whitlock@albertahealthservices.ca (Kerri Whitlock)
Staff:
Dr. Francois Bolduc, Clinic & Medical Director
Ms. Kerri Whitlock, Clinic Coordinator
Chile
Support Networks
➥ Corporacion X Fragil De Chile
Division of Developmental Pediatrics and Provincial Medical Genetics Program
Contact:
+56 9 9744 4141 (Carolina Diaz), or
+56 9 7856 6770 (Patricia Vergara)
Staff:
Carolina Diaz
Patricia Vergara
➥ Centro de Diagnostico, Tratamiento y Seguimiento de Pacientes con Síndrome X Frágil (CDTSXF)
INTA University of Chile
Contact:
+56 9 9997 4676
angelapugin@yahoo.com (Dr. Ángela Pugin
Staff:
Dr. Ángela Pugin
China
Support Networks
➥ 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:
hanying1568@126.com
Staff:
Ying Han, MD, PhD
➥ Children’s Hospital of Fudan University
Fragile X Syndrome Clinic
NO.399 Wanyuan Rd, Shanghai, China
Ages Seen: 0-35 years
Contact:
0086-13162365629
fudanfxs@163.com
Staff:
Dr. Qiong Xu, Clinic Director
Yiting Zhu, Clinic Coordinator
Colombia
Support Networks
➥ Asociación X Frágil Colombia
Contact:
+57 310 8000599
info@xfragilcolombia.org
Staff:
Joanne Latore
➥ Universidad del Valle
Cali, Colombia
Contact:
00573182800698
wilmar.saldarriaga@correounivalle.edu.co (Wilmar Saldarriaga Gil)
Staff:
Wilmar Saldarriaga Gil, Medical Director
Denmark
Clinics
➥ Center for Fragile X Syndrome
Rigshospitalet
Department of Clinical Genetics
Blegdamsvej 9
Copenhagen, Denmark
+45 43 26 01 00
Contact:
+45 29 20 48 50
fragiltx.rigshospitalet@regionh.dk
Staff:
Dr. Bitten Schönewolf-Greulich
Ecuador
Clinics
➥ Neurodesarrollo Quito
Elías Sinalín y pasaje privado lote #3
Quito, Ecuador
Contact:
+45 29 20 48 50
neurodesarrolloquito@gmail.com
Staff:
Jenniffer Villarreal, Clinic Director
Graciela Oña, Clinic Coordinator
Georgia
Support Networks
➥ Fragile X Syndrome Georgia
Contact:
fragilexsyndromegeorgia@gmail.com
Clinics
➥ Fragile X Center
MediClubGeorgia Medical Center
Tbilisi, Georgia
Contact:
+995 59721444
fragilexsyndromegeorgia@gmail.com
Staff:
Dr. Gia Melikishvili, Medical Director
Dr. Nazhi Tabatadze, Clinic Coordinator
Germany
Support Networks
➥ Interessengemeinschaft Fragiles-X e.V.
Contact:
+49 381 29642375
gs@frax.de
Staff:
Antje Beckert
Clinics
➥ Netzwerk Fragiles-X am UKT
Contact:
+49 7071 2984734
netzwerk@frax.de
Staff:
Dr. Ulrike Gaiser
India
Support Networks
➥ Fragile X Society of India
Contact:
ph: +91 22 6664 2151
cell: +91 98201 99092
info@fragilex.in
Staff:
Shalini N. Kedia, Chairperson
Clinics
➥ Ummeed Child Development Center
Ground Floor, Mantri Pride 1-B, 1/62, N.M.
Joshi Marg, Subhash Nagar,
Lower Parel, Mumbai 400 011
Contact:
+91 22 6248 8100
aditi.jha@ummeed.org (Ms. Aditi Jha)
Staff:
Dr. Roopa Srinivasan, Medical Director
Ms. Aditi Jha, Clinic Coordinator
Indonesia
Clinics
➥ Center for Developmental Disorder and Autism (CEDIA)/ Center for Biomedical Research (CEBIOR)
Central Laboratory 2nd floor
Genetic Clinic of National of Diponegoro University Hospital
Faculty of Medicine Diponegoro University
Prof. Soedarto — Street no1, Semarang 50275, Indonesia
Contact:
Dr. Agustini Utari
+62 24 8454714
agustiniutari@gmail.com
Staff:
Dr. Agustini Utari
Ireland
Support Networks
➥ Irish Fragile X Society
Contact:
+353 87 657 3089
MariaPanza@hotmail.com (Maria Panza)
Staff:
Maria Panza
Israel
Support Networks
➥ The National Fragile X Association of Israel
Contact:
ph: +972 1-700-708-043
cell: +972 50-684-0450
xshavir@gmail.com
Staff:
Sharon Glasner, Chair
Italy
Support Networks
➥ Associazione Italiana Sindrome X-Fragile
Clinics
➥ Rete Multidisciplinare X Fragile Padova
Università-Azienda ospedaliera di Padova
Via Giustiniani 2, 35128 Padova
Contact:
+39 049 821 1430
alessandra.murgia@unipd.it (Prof. Alessandra Murgia)
Staff:
Prof. Alessandra Murgia, Medical Director
Dr. Marco Ricca, Clinic Coordinator
➥ Ospedale Pediatrico Bambino Gesù
UOC Neuropsichiatria dell’Infanzia e dell’Adolescenza
Viale Ferdinando Baldelli 41, 00146, Roma, Italy
Contact:
+39 066 859 4721 or +39 066 959 2735
federica.montanaro@opbg.net (Dr. Alice Montanaro)
paolo.alfieri@opbg.net (Dr. Paolo Alfieri)
Staff:
Prof. Stefano Vicari, Medical Director
Dr. Alice Montanaro, Clinic Psychologist
Dr. Paolo Alfieri, Clinic Coordinator
Japan
Support Networks
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:
➥ Tottori University Research
➥ Kobe University
Lesotho
Support Networks
➥ Fragile X South Africa
Contact:
sfraser@ilesotho.com (Sandrah Fraser)
Staff:
Sandrah Fraser, Parent Contact
Mexico
Clinics
➥ Centro de Investigaciones “Dr. Hideyo Noguchi”
Mérida, Yucatan
Contact:
+52 999 593 2994
Staff:
Dr. Doris Pinto
Dr. Silvina Contreras
Dr. Zacil Vilchis
➥ Star Médica Hospital
Mérida, Yucatan
Contact:
+52 999 370 1913
felixcampos@gmail.com (Dr. Felix Campos)
Staff:
Dr. Felix Campos
➥ Hospital Universitario de Nuevo León
Clínica de X frágil Monterrey
Monterrey, Mexico
Contact:
+81 83 338 623
neurodesarrollohu@gmail.com
Staff:
Dr. Diana Villarreal
Netherlands
Support Networks
➥ Fragiele X Vereniging Nederland
Contact:
+31 6 14332033
info@fragielex.nl
Staff:
Hanneke van der Heijden, Secretariat, Parent Support
New Zealand
Support Networks
➥ Fragile X New Zealand
Contact:
+64 210 446 299
+64 508 938 0552 (local)
andrea@fragilex.org.nz (Andrea Lee)
Staff:
Andrea Lee
Norway
Philippines
Support Networks
➥ 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
Contact:
+632 8706 3086
aasg.asmph@ateneo.edu
Portugal
Support Networks
➥ Associacão Portuguesa da Síndrome do X Frágil
Rua Álvaro dos Reis nº 10, Sintra, Portugal
Contact:
ph: +351 21 456 2190
cell: +351 967 271 404
geral@apsxf.org
Staff:
Maria Manuel Parrinha
Russia
Support Networks
➥ Russia Fragile X
Contact:
+7 909 690 2124
mail@fragilexsyndrome.ru
Staff:
Tatiana Grigoryeva
Serbia
Support Networks
➥ Fragile X Society – BALKANS
Clinics
➥ Special Hospital for Cerebral Palsy and Developmental Neurology
Sokobanjska 17a
Belgrade, Serbia
Contact:
+38163510304
Staff:
Dr. Danijela Bascarevic, Medical Director
Dr. Dragana Protic, Consulting Physician
Dr. Sanja Dimitrijevic, Clinic Coordinator
South Africa
Support Networks
➥ Fragile X South Africa
Contact:
gwen@hedge.co.za (Gwen Hedges)
sfraser@ilesotho.com (Sandrah Fraser, alternate and for Lesotho)
Staff:
Gwen Hedges
Sandrah Fraser
Spain
Support Networks
➥ Spanish Federation of Fragile X Syndrome
The Spanish Federation of Fragile X Syndrome is composed of multiple associations throughout the country.
➥ Associació Catalana Síndrome X Fràgil
➥ Consulta de Genética Clínica
Hospital Clínico Universitario “Lozano Blesa” de Zaragoza
Contact:
+34 976 55 64 00 Ext. x4041
framos@unizar.es (Dr. Feliciano J. Ramos)
Staff:
Dr. Feliciano J. Ramos
Clinics
➥ Regional University Hospital of Malaga
Psychiatric or Neuropediatric Service
UGC Salud Mental
Laboratorio de Investigación
Pabellon 6 sot. Hospital Civil
29009 Málaga, Spain
Contact:
+34 658 14 60 62
ydediego@yahoo.es (Yolanda de Diego-Otero)
rrro@hotmail.com
Staff:
Dr. Lucía Pérez-Costillas (Psychiatrist), Medical Director
Dr. Rocío Calvo-Medina (Neuropediatrician), Medical Director
Yolanda de Diego-Otero (Geneticist), Clinic Coordinator
➥ Corporació Sanitaria Parc Taulí (Parc Tauli Hospital)
Rare Diseases Department, Fragile X Syndrome Unit
Pza. Parc Taulí, 1
Sabadell
Barcelona, Spain
Contact:
+34 699 83 35 11 Ext. 21290, or
+34 937 23 10 10 Ext. 21003
ana.roche.mar@gmail.com (Dr. Ana Roche)
Staff:
Dr. Ana Roche, Medical Director & Clinic Coordinator
Sri Lanka
Support Networks
➥ Children’s Discovery House
No. 651/25, Elvitigala Mawatha
Colombo 00500, Sri Lanka
Occupational therapy and other services for children with special needs.
Contact:
+94 11 236 9713
info@cdhcolombo.com
Switzerland
Support Networks
➥ Fraxas: Association X Fragile Suisse
Contact:
+41 76 509 79 03
contact@fraxas.ch
Staff:
Kristin Mulcock, Parent Contact
Turkey
Clinics
➥ Kanuni Eğitim Araştırma Hastanesi/ Trabzon
Training Hospital of Ministry of Health
Contact:
onurburak007@yahoo.com (Dr. Onur Dursun)
Staff:
Dr. Onur Dursun
United Kingdom
Support Networks
➥ The Fragile X Society – United Kingdom
Contact:
+44 1371 875100
info@fragilex.org.uk
United States
Support Networks
➥ National Fragile X Foundation (NFXF)
1012 14th St. NW
Suite 500, Washington, DC 20005
Contact:
+1 800-688-8765
contact@fragilex.org
Clinics
➥ Fragile X Clinical & Research Consortium (FXCRC)
Uruguay
Support Networks
➥ Asociacion X Fragil del Uruguay
Clinics
For assistance with finding appropriate clinical services in Uruguay, please contact:
Daniela Sniadower
+598 2622 4711
xFragilUruguay@gmail.com
Clinica Sindrome X Fragil (Facebook) | Sindrome X Fragile Uruguay (Facebook)
