Non-US Support Groups&Contacts . . .



Velo-Cardio-Facial
Syndrome
Educational Foundation,
Incorporated



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International
VCFSEF Support Groups and Organizations

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, pleasecontact the Foundation Officeand 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, pleasecontact the Foundation Officeor check again in a few days.

Last Update: February 19, 2004Updated list for Israel.

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Australia

Canada

  • Harriet Sugar-Miller
    320 Cote St. Antoine
    Westmount, Quebec H3Y2J4
    Email:

    .

  • Joann Pettipas
    375-26 Kingscourt Drive
    Waterloo, Ontario, N2L 3N7
    Phone: 519-746-6770
    Email:

    .

England

  • Julie and Robert Squair
    The 22q11 Group
    P.O. Box 1302
    MILTON KEYNES
    MK13 0LZ, United Kingdom 1908 320852
    Telephone: UK 1908 320852
    Email:

    .

  • HeatherandPhilip
    The 22q11 Group
    P.O. Box 1302
    MILTON KEYNES
    Telephone: UK 161 4855155
    Email:
    Website: 22q11 Website
  • Max Appeal!
    Lansdowne House
    13 Meriden Avenue
    Wollaston, Stourbridge
    West Midlands, England DY8 4QN
    Telephone: +44 1384 821227
    Email: (updated 5/20/03)
    Website: www.maxappeal.org.uk

France

  • Dominique Pfeiffer
    GENERATION 22
    24 rue Constant Strohl
    F- 67000 Strasbourg
    France
    tél/fax : ++ 33 3 88 31 81 32
    web site : www.generation22.asso.fr

Israel

Website:http://www.eitan-rd.co.il/(in Hebrew)
“The Israel Association of Rare Diseases”

Spain

  • Inaki Sancho (updated 6/20/03)
    Dr. Maranon 7 3�C
    20009 San Sebastian (Spain)
    Telephone: Spain +34 43 212524
    Email:

    .

  • 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, pleaseemail uswith the precise contact information which you authorize to be placed on the web site.

Click here forU.S. Support Groups.