Privacy Policy

Dup15q Alliance is committed to protecting the privacy of our families. To better protect your privacy, we provide this notice explaining our information practices. We define personal information to include: name(s), email address, mailing address, phone number, survey responses, registry information and content of your correspondence with us.

When you contact [email protected] or use the contact form, your email address and other information included in your email may be forwarded to the appropriate person(s) within Dup15q Alliance or our professional advisors for a response. A copy of your correspondence may be retained at the Dup15q Alliance home office and also by the responding individual.

Dup15q Alliance has established and maintains a mailing database. The mailing list includes families of affected individuals, friends, relatives, physicians, scientists, contributors and others interested in chromosome 15q duplication syndrome. Dup15q Alliance will never release our mailing list or the names of our member families to any outside organization or third party. However, if an outside organization sends us information for distribution to Dup15q Alliance families, we may mail it to you after the Board approves the mailing.

Information determined to be confidential can only be released by written or verbal permission by the person or organization identified. Verbal permission can only be given for a specific release. Any general release must be in writing.

The Dup15q Alliance website provides links to other sites that may be of interest. Dup15q Alliance is not responsible for the privacy practices or content of other such websites.

Dup15q Alliance is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programs. Every reasonable effort will be made to maintain the security of all personal information in our possession. Access to personal information will be limited to Dup15q Alliance board members and other individuals who have a need to use such information in the course of their work on approved projects. In all instances, this work will be directly overseen by a member of the Dup15q Alliance Board of Directors. All individuals will be instructed in the confidentiality requirements of the organization.