International

 22q11.2 Clinic Consortium Spotlight

The International 22q11.2 Foundation is spotlighting each of the dedicated 22q clinics around the world, as they share their information, so families can learn more about the clinics, their offerings and resources, as well as location and specialties.

The Dalglish Family 22q Clinic

The Dalglish Family 22q Clinic for adults with 22q11.2 deletion syndrome (22q) was created in 2012 at the Toronto General Hospital, University Hospital Network (UHN) in Toronto, Canada, through a generous donation by the Dalglish Family and Weston Foundation.

The Clinic is the first to focus on Adults with 22q11.2 deletion syndrome, providing specialized, patient-centred care to adults and their families. The Clinic also provides educational services for trainees and health care providers. In addition, the Clinic is involved in world-class research to improve the quality of life for individuals and families affected by the syndrome.

A typical visit to the centre for the first appointment takes up to 4 to 6 hours. Patients and families usually meet with the social worker, dietitian and doctor, all of whom specialize in 22q. The Patient Flow Coordinator contacts families ahead of time to explain the process.

Follow-up visits are generally shorter than the first visit, but this will depend on the type of appointment and which specialist(s) are being seen.

The Clinic team is dedicated to providing the most comprehensive and seamless care to patients, families and caregivers. The aim is to plan care with different specialties all in one visit (for example: psychiatry, cardiology and endocrinology).

The following specialty areas are provided and/or coordinated through the Dalglish Family 22q Clinic: genetics, psychiatry, cardiology, endocrine, neuropsychology, GI/nutrition, social work and neurology. The Clinic serves patients from age 17 years and up. The Clinic has experience with over 360 adults with 22q.

The Clinic focuses on providing services for Canadian patients with 22q. If you would like to refer an international patient to the Clinic please check the website of the International Patient Program for updates, particularly with respect to hospital policy on patients from the US.

Director: Anne Bassett, MD, FRCPC

Address: Toronto General Hospital, 8 Norman Urquhart, Room 802, 200 Elizabeth Street, Toronto, Ontario, M5G 2C4 Canada
Phone: (416) 340-5145 Fax: (416) 340-5004
Email: 22q@uhn.ca
Website: http://www.22q.ca/

Ourimbah, Australia – The University of Newcastle

Address: E1. 19 Science Offices Ourimbah 10 Chittaway Road Ourimbah NSW 2258 Australia

Phone: +61 434 94490

Fax: +61 434 94404

Linda Campbell, Phd

Email 

Website

Leuven, Belgium – Catholic University of Leuven

Anne Swillen, PhD

Address: Department of Human Genetics O & N Herestraat 49- box 602 3000 Laueven
Phone: +32 16 3 41483
Email: ann.swillen@med.kuleuven.be
Website: http://www.kuleuven.be/wieiswie/en/unit/50000622


Koen Devriendt, MD

Address:  Department of Human Genetics O & N Herestraat 49- box 602 3000 Leuven
Phone: +32 16 3 45903
Email: koen.devriendt@med..kuleuven.be
Website: http://www.kuleuven.be/wieiswie/en/unit/50000622

Toronto, ON – The Dalglish Family 22q Clinic 

Director: Anne Bassett, MD, FRCPC

Address: Toronto General Hospital, 8 Norman Urquhart, Room 802, 200 Elizabeth Street, Toronto, Ontario, M5G 2C4 Canada
Phone: (416) 340-5145 Fax: (416) 340-5004
Email: 22q@uhn.ca
Website: http://www.22q.ca/
Facebook: https://www.facebook.com/DalglishFamily22qClinic/?fref=ts

The Dalglish Family 22q Clinic

The Dalglish Family 22q Clinic for adults with 22q11.2 deletion syndrome (22q) was created in 2012 at the Toronto General Hospital, University Hospital Network (UHN) in Toronto, Canada, through a generous donation by the Dalglish Family and Weston Foundation.

The Clinic is the first to focus on Adults with 22q11.2 deletion syndrome, providing specialized, patient-centred care to adults and their families. The Clinic also provides educational services for trainees and health care providers. In addition, the Clinic is involved in world-class research to improve the quality of life for individuals and families affected by the syndrome.

A typical visit to the centre for the first appointment takes up to 4 to 6 hours. Patients and families usually meet with the social worker, dietitian and doctor, all of whom specialize in 22q. The Patient Flow Coordinator contacts families ahead of time to explain the process.

Follow-up visits are generally shorter than the first visit, but this will depend on the type of appointment and which specialist(s) are being seen.

The Clinic team is dedicated to providing the most comprehensive and seamless care to patients, families and caregivers. The aim is to plan care with different specialties all in one visit (for example: psychiatry, cardiology and endocrinology).

The following specialty areas are provided and/or coordinated through the Dalglish Family 22q Clinic: genetics, psychiatry, cardiology, endocrine, neuropsychology, GI/nutrition, social work and neurology. The Clinic serves patients from age 17 years and up. The Clinic has experience with over 360 adults with 22q.

The Clinic focuses on providing services for Canadian patients with 22q. If you would like to refer an international patient to the Clinic please check the website of the International Patient Program for updates, particularly with respect to hospital policy on patients from the US.


Toronto, ON – 22q Deletion Syndrome Clinic

Address: The Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8
Phone: (416) 813-6390   Fax: (416) 813-5346
Website 

Santiago, Chile – Pontifical Catholic University of Chile

Gabriela Repetto, MD
Endocrinology & Genetics: Nancy Unanue, MD

Address: Av Libertador Bernardo O Higgins 340, Santiago, Santiago Metropolitan Region, Chile

Phone Number: +56 2 2354 2000
Email: grepetto@udd.cl
Website: http://medicina.udd.cl/persona/gabriela-repetto/

London, England – Maudsley Hospital (Great Ormond Street Hospital)

Adolescent Psychiatrist: Clodagh Murphy

Address: Bethlem Royal Hospital Monks Orchard Road Beckenham BR3 3BX London, England
Phone Number: 020 3228 4653
Email: clodagh.m.murphy@kcl.ac.uk

Marseille, France – Hospital Timone

Nicole Philip, MD

Address: 264 rue Saint-Pierre 13385 MARSEILLE CEDEX 5 FRANCE
Phone Number: 33 (0)4 91 38 66 36
Email: Nicole.PHILIP@mail.ap-hm.fr
Website: http://fr.ap-hm.fr/service/departement-de-genetique-medicale-hopital-timone

Dublin, Ireland – Beaumont Hospital

Professor of Psychiatry: Kieran Murphy, MD

Address: Beaumont Road, Dublin Ireland
Phone: (01)-809-3740
Email: KMurphy@rcsi.ie
Fax: (01)-837-6982
Website: http://www.beaumont.ie

Ramat Aviv, Israel – Tel Aviv University

Doron Gothelf, MD

Address: Tel Aviv University POB 39040
Phone Number: 03-5302663
Email: gothelf@post.tau.ac.il
Website: http://neuroscience-web.tau.ac.il/en/?post_type=portfolio&p=1230

Rome, Italy – Pediatric Hospital Bambino Gesu

Maria Cristina Digilio, MD

Address: Piazza S. Onofrio, 4-00165 Rome
Phone Number: +39-06-68592227
Email: ten.gbpo@oiligid
Website: http://www.ospedalebambinogesu.it/home

Cardiologist: Bruno Marino, MD (University La Sapienza)
Address: Viale Regina Elena, 324 Rome, 00161 Italy
Email: bruno.marino@uniroma1.it

Tokyo, Japan – Ochanomizu University

Pediatric Clinical Geneticist: Hiroshi Kawame, MD

Address: 2-1-1 Ohtsuka, bunkyo-ku Tokyo 112-8610 Japan
Phone: 81-3-5978-5587
Email: kawame.hiroshi@ocha.ac.jp


 

Tokyo, Japan – The University of Tokyo Hospital

Psychiatrist: Kiyoto Kasai, MD

Address: 7-3-1 Hongo, Bunkyo-ku, Tokyo 113-8655, Japan
Phone: 81-3-3815-5411
Email: 22q.research@gmail.com

 

Maastricht, Netherlands – Maastricht University

Psychiatrist: Therese van Amelsvoort, MD

Address: Minderbroedersberg 4-6, 6211 LK Maastricht, Netherlands
Phone: +31-43-3883584
Email: t.vanamelsvoort@maastrichtuniversity.nl
Website: http://mhens.unimaas.nl


Utrecht, Nethrelands – University Medical Centre

Child Psychiatrist: Jacob Vorstman, MD, PhD

Address: UMC Utrecht Brain Center Rudolf Magnus Universiteitsweg, 100 3584 CG Utrecht
Phone: +31 88 75 8180
Email: j.a.s.vorstman@umcutrecht.nl
Website:  http://research.umcutrechthersencentrum.nl
Dino Colo, MD, PhD

Warsaw, Poland – Instytut Matki i Dziecka, Department of Medical Genetics

Beata Nowakowska, PhD

Address: Kasprzaka 17A,Warsaw, Poland
Phone Number: +48 22 3277140
Email: Beata.Nowakowska@med.kuleuven.be

Madrid, Spain – University Hospital La Paz

Sixto Garcia-Minaur, MD

Address: Pº de la Castellana, 261 28046 – Madrid
Phone: 91 727 70 00
Email: sixto.garciamin@gmail.com
Website: http://www.madrid.org/cs/Satellite?language=es&pagename=HospitalLaPaz/Page/HPAZ_home


Mallorca, Spain – University Hospital Son Espases

Damian Heine Suner, PhDJaume Morey Canyelles
Jaume Morey Canyelles

Address: Ctra. de Valldemossa 79, Palma City, 07010
Phone: 871 205 000
Email: damian.heine@ssib.es
Website: http://www.hospitalsonespases.es/index.php?option=com_k2&view=item&id=763:gen%C3%B3mica-de-la-salud&Itemid=804&lang=es


Barcelona, Spain – Hospital Universitario Vall d´Hebron

Dra. Cueto González, Ana María and Dra. Vendrell, Teresa

Address: Passeig de la Vall d´Hebrón 119-129, Barcelona 08035
Phone: 934 89 31 00
Email: amcueto@vhebron.net
Website: http://www.vhebron.net/es/

Geneva, Switzerland – University of Geneva

Stephan Eliez, MD

Address: University Medical Center Dept. of Neuroscience, room 7008 1 rue Michel-Servet, CH-1211 Geneva 4
Phone: 0041 22 379 5381
Email: Stephan.eliez@unige.ch
Fax: 0041 22 379 5402
Website: http://neurocenter.unige.ch/groups/eliez.php

Gothenburg, Sweden – Queen Silvia Children’s Hospital

General Pediatrics & Immunology: Solveig Oskarsdottir, MD

Address: Department of Pediatric Immunology The Queen Silvia Children’s Hospital- Sahlgrenska University Hospitaal Rondgatan 10 SE 41685 Goteborg Sweden
Phone: 46 31 343 5220
Email: janette.nystromy@vgregion.se

Cardiff, Wales – Cardiff University

Neurologist: Michael Owen, MD

Address: Cardiff University School of Medicine Hadyn Ellis Building Maindy Road Cathays Cardiff CF24 4HQ
Phone: +44 029 20 688 320, ext. 88320
Email: OwenMJ@cf.ac.uk
Website: http://medicine.cf.ac.uk/person/prof-michael-john-owen/

Marianne van den Bree, PhD
Email: VANDENBREEMB@cardiff.ac.uk

 

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