Foundation Notice of Privacy Rights

This notice describes how information about you may be used and disclosed. Please read it carefully.

Phelan-McDermid Syndrome Foundation 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 include families and interested professionals.

Only members who choose to be added to our network database or to 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 e-mail and hard copy mail 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. If contacted, members are under no obligation to participate in any proposed studies.

Phelan-McDermid Syndrome Foundation 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 their Regional Representative on the Membership Committee.

Phelan-McDermid Syndrome Foundation 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.

Phelan-McDermid Syndrome Foundation 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: September 1, 2009

Last Updated on Monday, 08 February 2010 21:11
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