International Family Support Network & Clinics | NFXF (original) (raw)
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- Fragile X 101
* Fragile X 101
* Prevalence
* Signs and Symptoms
* Genetics and Inheritance
* Testing and Diagnosis - Fragile X Syndrome
* Fragile X Syndrome
* Newly Diagnosed
* Fragile X & Autism - Associated Conditions
* Premutation
* FXPOI
* FXTAS
* New Developments - Xtraordinary Individuals
- 31 Shareable Fragile X Facts
- Fragile X Info SeriesFact sheets by topic
- Fragile X MasterClass™️
- Knowledge CenterFrequently asked questions.
- Fragile X 101
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- Resources for Families
- FXS Strategies by Topic
* Adulthood
* Autism
* Behavior
* COVID-19
* Daily Living
* Females
* Medications
* Physical & Medical Concerns
* Puberty & Sexuality
* School & Education - FXS Resources by Age
- Premutation Topics
* The Fragile X Premutation
* FXTAS Resources
* FXPOI Resources
* Reproductive Resources - Newly Diagnosed
- ResearchLearn and participate
* Research 101What is research?
* STX209 Reconsent ProjectEnrollment is open
* International Fragile X Premutation Registry — For ParticipantsEnroll now
* Participate in ResearchMyFXResearch Portal
* Original Research Articles
* FORWARD-MARCHDatabase and registry
* Research ResultsNew and archives - Find a Fragile X Clinic
* U.S. Fragile X Syndrome Clinics
* FXTAS-Specific Clinics
* International Clinics & Organizations - Find a Contact Near You
- Knowledge CenterOur Fragile X library
- Webinars & Videos
- Printable Resources
- Treatment Recommendations
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- Resources for Professionals
- NFXF MasterClass™️ for Professionals
- Research Readiness ProgramResearch facilitation for researchers
- NFXF Data Repository
- International Fragile X Premutation Registry — Research Requests
- FORWARD-MARCHRegistry & Database
- NFXF-Led PFDD Meeting for Fragile X SyndromePatient-focused drug development
- Marketing Your Research Opportunities
- Treatment Recommendations
- Fragile X Clinics
* U.S. FXS Clinics
* FXTAS-Specific Clinics
* International Clinics & Organizations - NFXF RESEARCH AWARDS
* Randi J. Hagerman Summer Scholar Research Awards
* Junior Investigator Awards
Get
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- Fragile X 101
* Fragile X 101
* Prevalence
* Signs & Symptoms
* Genetics and Inheritance
* Testing and Diagnosis - Fragile X Syndrome
* Fragile X Syndrome
* Fragile X & Autism - Associated Conditions
* Premutation
* FXPOI
* FXTAS
* New Developments - Xtraordinary Individuals
- 31 Shareable Fragile X Facts
- Fragile X Info Series
- FRAGILE X MASTERCLASS
- Knowledge Center
- Fragile X 101
-
- Resources for Families
- FXS Strategies by Topic
* Adulthood
* Autism
* Behavior
* Daily Living
* Females
* Medications
* Physical & Medical Concerns
* Fragile X and Puberty & Sexuality
* School & Education - FXS Resources by Age
- Premutation Topics
* The Fragile X Premutation
* FXTAS Resources
* FXPOI Resources
* Reproductive Resources - Newly Diagnosed
- Research
* Research 101: What is Research?
* STX209 Reconsent Project
* International Fragile X Premutation Registry — For Participants
* Participate in Research
* Original Research Articles
* FORWARD-MARCH
* Research Results Roundup - Find a Clinic Near You
- Find a Contact Near Your
- Knowledge Center
- Webinars & Videos
- Printable Resources
- Treatment Recommendations
-
- Resources for Professionals
- NFXF MasterClass™️ for Professionals
- Research Readiness Program
- NFXF Data Repository
- International Fragile X Premutation Registry — Research Requests
- FORWARD-MARCH Registry & Database
- NFXF-Led Patient-Focused Drug Development Meeting
- Marketing Your Research Opportunities
- Treatment Recommendations
- Find a Clinic Near You
- NFXF Research Awards
* Randi J. Hagerman Summer Scholars
* Junior Investigator Awards
International Family Support Network & Clinics
International Family Support Network & ClinicsNFXF2024-11-11T11:20:41-05:00
Argentina
CENAGEM – Centro Nacional De Genetica Medica
Las Heras 2670 3er Piso Genetica
Buenos Aires
Contact: Miguel Aguirre, MD, Medical
Phone: +54 11 4801-2326
Email: vlotersztein@yahoo.com.ar
Links: Website
Medical Director: Miguel Aguirre, MD
Clinic Coordinator: Vanesa Lotersztein e Isabel Luisa Valencia
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.
Belgium
Brazil
Associação X Fragil do Brasil
Links: Website
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
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
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
China
Children’s Hospital of Fudan University
Fragile X Syndrome Clinic
NO.399 Wanyuan Rd, Shanghai, China
Ages Seen: 0-35 years
Clinic Director: Dr. Qiong Xu
Contact: Yiting Zhu, Clinic Coordinator
Email: fudanfxs@163.com
Phone/Scheduling Appointments: 0086-13162365629
Links: Website
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: Ying Han, MD, PhD
Email: hanying1568@126.com
Links: WeChat Apps
Colombia
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
Ecuador
Neurodesarrollo Quito
Elías Sinalín y pasaje privado lote #3
Quito, Ecuador
Clinic Director: Jenniffer Villarreal
Clinic Coordinator: Graciela Oña
Phone: +45 29 20 48 50
Email: neurodesarrolloquito@gmail.com
Links: Website
France
MOSAÏQUES Association des “X Fragile”
Links: Website
Association Nationale Syndrome X Fragile & Maladies Associees
Phone: +33 4 69 67 94 58
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: fragilexsyndromegeorgia@gmail.com
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 of National Diponegoro University Hospital
Faculty of Medicine Diponegoro University
Prof. Soedarto Street no1, Semarang 50275, Indonesia
Contact: Dr. Agustini Utari
Phone: +62 24 8454714
Email: agustiniutari@gmail.com
Ireland
Israel
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
Ospedale Pediatrico Bambino Gesù
UOC Neuropsichiatria dell’Infanzia e dell’Adolescenza
Viale Ferdinando Baldelli 41, 00146, Roma, Italy
Medical Director: Prof. Stefano Vicari
Clinic Psychologist: Dr. Alice Montanaro
Email: federica.montanaro@opbg.net
Clinic Coordinator: Dr. Paolo Alfieri
Email: paolo.alfieri@opbg.net
Phone: +39 066 859 4721 or +39 066 959 2735
Links: Website
Japan
From Tottori University Research
Link: Website
Lesotho
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
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
Poland
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
Russia
Serbia
South Africa
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
Sri Lanka
Children’s Discovery House
Occupational therapy and other services for children with special needs.
No. 651/25, Elvitigala Mawatha
Colombo 00500, Sri Lanka
Phone: +94 11 236 9713
Email: info@cdhcolombo.com
Links: Website
Switzerland
Turkey
Kanuni Eğitim Araştırma Hastanesi/ Trabzon
Training Hospital of Ministry of Health
Contact: Dr. Onur Dursun
Email: onurburak007@yahoo.com
Links: Website
United Kingdom
United States
National Fragile X Foundation (NFXF)
1012 14th St. NW
Suite 500, Washington, DC 20005
(800) 688-8765
Phone: +1 800-688-8765
Email: contact@fragilex.org
Fragile X Clinical & Research Consortium (FXCRC)
Links: Website
Uruguay
Asociacion X Fragil del Uruguay
Links: Facebook