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22q13 Deletion Foundation / Phelan-McDermid Syndrome Support Group and Foundation Chromosome 22 Central are volunteer organizations. Every effort has been made to ensure the accuracy of the information provided on this website.
Links to other resources are provided solely as a means of further information, and the 22q13 Deletion Syndrome / Phelan-McDermid Syndrome Support Group and Foundation do not endorse any such resources.
Any information provided to members or the general public is provided for educational purposes only, and is not intended to replace professional advice from doctors or therapists. 22q13 Deletion Syndrome / Phelan-McDermid Syndrome Support Group and Foundation representatives, correspondents or board members DO NOT under any circumstances offer medical advice. Our group’s purpose is to strictly offer support and basic information. We are run by a group of caring parents and are not trained to offer advice. All information we provide is strictly on an information basis only, and should be shared with your own medical professionals.
It is important to understand that when reading facts about specific disorders, not all people affected will be the same. As with any disorder, there are degrees of severity, and it is important for parents to understand these facts. It is recommended that information you receive from 22q13 Deletion Syndrome / Phelan-McDermid Syndrome Support Group and Foundation be shared with professionals for comments or advice.
Any concerns regarding the content of our web site can be directed to info@22q13.org.
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This notice describes how information about you may be used and disclosed. Please read it carefully.
22q13 Deletion Foundation / Phelan-McDermid Syndrome Support Group are voluntary organizations which share 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 22q13 Deletion Syndrome / Phelan-McDermid Syndrome Support Group and Foundation include families and interested professionals.
Only members who choose 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 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.
22q13 Deletion Syndrome / Phelan-McDermid Syndrome Support Group and 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.
22q13 Deletion Syndrome / Phelan-McDermid Syndrome Support Group and 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.
22q13 Deletion Syndrome / Phelan-McDermid Syndrome Support Group and 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: July 1, 2005
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