The following support groups have been established to aid parents and family members in dealing with and learning about the many facets of caring for a person affected with Velo-Cardio-Facial Syndrome. They are educational and supportive in nature and are NOT medical service providers, nor do they give medical advice or opinion. Medical advice should be obtained ONLY from a competent medical professional. If the coordinator of your support group does not have knowledge of competent medical professionals in your area who are familiar with VCFS, please contact the Foundation Office and we will attempt to direct you, if possible, to someone in your area.
Support Group information is updated as often as possible. If you don’t find your area listed, please contact the Foundation Office or check again in a few days.
The Dempster Family Foundation has provided a list of all of its facebook accounts for each state, click here for a copy of this information.
Select a represented country for it’s support group information.
• Australia • Argentina • Belgium • Canada • Denmark • France |
• Germany • Ireland • Israel • Italy • Jamaica • Mexico |
• Netherlands • New Zealand • Norway • Philippines • Romania • Spain |
• Sweden • Switzerland • United Kingdom |
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VCFS and 22q Foundation Inc.
Maria Kamper, President
Phone: +61 (0) 2 9958 2578
Email: [email protected]
Melinda Woods, Vice President
Email: [email protected]
Website: www.vcfsfa.org.au -
VCFS Foundation (Qld)
Steve Russell, President
Email: [email protected]
Katy Cassidy, Executive Officer
Email: [email protected]
PO Box 8191
Woolloongabba Qld 4102
Phone: +61(0) 7-3255-244
Website: www.vcfs.com.au -
Raymond G. Tanner
45 Southbound Avenue
Aberfoyle Park
South Australia 5159
Phone: 61 8 8270 2890
Email: [email protected] -
Online Support / Discussion Group
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Asociación Argentina Familias 22q11.2DS
Mr. Jorge E. Severio, Secretario General
Fundación de Endocrinología Infantil
Gral. Lucio N. Mansilla 2771
Capital Federal (C1425BPE)
Buenos Aires, Argentina
Phone: 54 – 911 – 5001 – 9497
Fax: 54 – 11 – 4371 – 9689
Email: [email protected]
Web site: https://www.vcfs.com.ar/
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Belgium (Flemish):
VECARFA Belgium
Joeri Sterckx
Email: [email protected]
Jochen Van Grieken
Email: [email protected]
Ann Swillen
Email: [email protected]
Website: www.vecarfa.be
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Belgium (French):
Relais22
Paul Havelange
Email: [email protected]
Tel:+ 32 475 522 877
Website: www.relais22.be
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Chromesome 22 Central
Stephanie St-Pierre
237 Kent Avenue, Timmins
Ontario CANADA
Phone: 705- 268-3099
website: www.c22c.org
Email: [email protected] or [email protected]. -
Generation 22q (Ottawa)contact: Genevieve Tozer8 DeNiverville DriveGloucester, OntarioPhone:613-249-9217Email: [email protected]discussion group: [email protected]
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22q11 Danmark
Sarah Demerbes
Email: [email protected]Maria Gregers Boers
Email: [email protected]Charlotte Olesen
Email: [email protected]Website: www.22q11.dk
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Generation22
Frédérique De Clercq
Email: [email protected]
17 avenue Montgolfier
93190 Livry Gargan
Tel: +33.(0)1.43.02.32.80
Website: www.generation22.fr
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Kids-22q11
Gudrun Fahrenholz (Foreign Affairs)
Email: [email protected]Stephan Schmid (President)
Email: [email protected]Website: www.kids-22q11.de
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22q11Ireland
Anne Lawlor
6 Marino Green
Marino, Dublin 3
Ireland
Email: [email protected]
Email: [email protected]Kieran Murphy
Email: [email protected]Website: www.22q11ireland.org
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Helen Tzemach
Email: [email protected] -
Sara Bitan
Email: [email protected] -
Michal Linial
Email: [email protected]
Phones: 972-56-982970, 972-9-7495597
Website: https://www.eitan-rd.co.il/ (in Hebrew)
“The Israel Association of Rare Diseases”
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Aidel22
Giulietta Cafiero
Via Carlo Mirabello, 19
00195 Roma (Italy)
Tel: +39 06 37514488
Mobile: +39 348 6715251
Email: [email protected]
Email: [email protected]
Website: www.aidel22.it
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The Velo-Cardio- Facial Syndrome Education Foundation of Jamaica/ Caribbean
Yvonne Campbell
Kingston, Jamaica
Phone: 1876-4785589
Email:[email protected]
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Association 22q11 Mexico
Valladolid, Yucatan, Mexico.Website: www.22q11mexico.orgemail: [email protected]Phone: (985)8563425
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Federatie van Ouderverenigingen
(Dutch Parents Organisations)
Mieke van Leeuwen
[email protected]Jacob Vorstman
Email: [email protected]Direct parent group contact:
Email: [email protected]
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VCFS Support Group
Contact: Melissa Richardson ( Email: [email protected])
C/- 1 Fairfield Lane,
Dannemora
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Foreningen22q11
Iversen Sissel
Email: [email protected]Morten Fornebo
Email: [email protected]Siw Thorvaldsen
Email: [email protected]Website: www.digeorge.no
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Leland Joseph R. Dela Cruz+ (63917) 533-9457Email: [email protected]
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Professional Contact- no known group
Bianca Simionescu
Email: [email protected]
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Inaki Sancho
Email: [email protected]
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Gonzalo Gonzalez Landa
Email: [email protected]
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Fwd: 22q11 Catalonia, Spain
Website: https://22q.es/
Email: [email protected]
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Föreningen 22q11
RoseMarie Larsson
Email: [email protected]Sólveig Óskarsdóttir
Email: [email protected]Website: www.22q11.se
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Connect22
Barbara and Laurent Gremaud
Email: [email protected]Stephan Eliez
Email: [email protected]Website: www.connect22.ch
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Max Appeal
Julie Wootton
15 Meriden Avenue
Stourbridge
West Midlands
DY8 4QN
Email: [email protected]Claire Hennessey
Max Appeal
Coombe Lodge
Blagdon
North Somerset
BS40 7RG
Tel: +44(0)1761462578
Email: [email protected]Website: www.maxappeal.org.uk
Helpline: +44 (0) 1384821227
Tollfree (within UK): 0800 389 1049
If no support group is listed for your area or region, please look to a neighboring area, if possible.
If you or your organization would like to be listed as someone who may be contacted regarding VCFS, please email us with the precise contact information which you authorize to be placed on the web site.