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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.
Select a represented country for it’s support group information.
Australia
Argentina
-
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/
Belgium
England
France
Ireland
Israel
Website: https://www.eitan-rd.co.il/
(in Hebrew)
“The Israel Association of Rare Diseases”
Italy
Italy – AIDEL22Giulietta Cafiero
c/o ICBD Via Carlo Mirabello,19 -00195 Rome
tel/fax: +39 06 37514488
Mobile: +39 348 6715251
Web Site: www.aidel22.it
E-mail: [email protected]
Jamaica
-
Carribean Support Group
Yvonne Campbell
Kingston, Jamaica
Phone: 1-876-533-7944
Email:
[email protected]
Mexico
-
Association 22q11 Mexico
Valladolid, Yucatan, Mexico.
Phone: (985)8563425
Netherlands
- Netherlands PROFESSIONAL GROUP ONLY (DO NOT LIST)
Mieke van Leeuwen
Federatie van Ouderverenigingen
(Dutch Parents Organisations)
P.O.Box 85276
3508 AG Utrecht, The Netherlands
Tel.: +31-30-2363767
E-mail: [email protected]
Frits A.Beemer, M.D.,PhD
Specialty: clinical genetics/pediatrics
Dept.of Medical Genetics
Mail nr.KC 04.084.2
University Medical Center Utrecht
P.O.Box 85090
3508 AB Utrecht, The Netherlands
Tel.: +31-30-2503810
E-mail: [email protected]
New Zealand
Norway
- Parental representative:
Morten Fornebo
Telephone +47 66 75 99 62 (home)
Telephone +47 98 28 10 15 (office)
Email: [email protected]
Professional representative:
Sissel Iversen
Telephone +47 51 58 57 65 (home)
Telephone +47 51 59 92 66 (office)
E-mail: [email protected]
(office)
E-mail: [email protected] (home)
Philippines
Spain
f 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.
Click here for
U.S. Support Groups
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