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Support for Disorders of
Chromosome 22
 
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 CONTACT DISORDERSCONNECTSHOP C22CEVENTSRESEARCHABOUT C22CJOIN C22C


milo

Milo, 5 years
DiGeorge Syndrome
(22q11.2 deletion syndrome)

myra

Myra, age 7
22q13 Deletion Syndrome
(Phelan-McDermid Syndrome)

rylan

Rylan, 2 years
Cat Eye Syndrome

Privacy Policy

THIS NOTICE DESCRIBES HOW INFORMATION ABOUT YOU MAY BE USED AND DISCLOSED. PLEASE REVIEW IT CAREFULLY.

  • C22C Inc. is a voluntary organization which shares information provided by members, with other registered members, for the purpose of supportive networking, or if families are interested in participating in research studies. Members of C22C include families and interested professionals.

  • Only members who select to be added to our network database or be published in our newsletter will have their confidential information shared between registered members. 

  • Members who choose to have their personal information published in the newsletter or family networking lists accept that the newsletter is distributed through hard copy mail and a closed e-mail list through Yahoogroups (no access to unregistered members) and understand that no method of electronic transmission is 100% secure. 

  • If members indicate a desire to accept contact for research purposes on the membership form, their confidential information may be shared with professional research institutes. Members if contacted are under no obligation to participate in any proposed studies.

  • C22C Inc. will not provide confidential information to requests made by outside parties without the direct signed consent of the individual, or in most cases, the consent of BOTH parents of the individual.

  • Registered members have the right to change their personal information at any time by contacting the head office of C22C Inc. 338 Spruce Street North, Timmins, Ontario, P4N 6N5 or by emailing steph.stpierre@gmail.com

  • C22C Inc. does NOT sell or provide confidential information for benefit or gain. No information is exchanged about registered members except in the above noted manner.

  • Registered members have the right to revoke their registration at anytime, and have all confidential information on them destroyed in an acceptable manner.

  • C22C Inc. has the right to revise the terms of this policy and members have the right to be notified in the event of any such change.

Effective date: July 9, 2003