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. To make this notice easy to locate, we make it available as a link on our home page. 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 info@dup15q.org 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.
The family directory is a resource to help families connect with other families. When you register with Dup15q Alliance, you can choose whether to share your contact information in the family directory that is distributed to Dup15q Alliance families, or keep it restricted to the mailing list only.
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.
Dup15q Alliance, P.O. Box 674, Fayetteville, NY 13066 USA
855-dup-15qa info@dup15q.org
Policy Regarding Use of Dup15q Alliance Trademarks
The trademarks, logos, and service marks (“Marks”) displayed on this website, and related websites belonging to Dup15q Alliance, including the Dup15q Alliance logo, among others, are trademarks of the Dup15q Alliance, are the property of Dup15q Alliance, and are protected. Their uses are restricted to those programs and events sponsored by Dup15q Alliance, and Dup15q Alliance trademarks may not be used for personal financial gain. Use of the Marks is prohibited without the express written consent of Dup15q Alliance. Nothing contained on the Site should be construed as granting, by implication, estoppel, or otherwise, any license or right to use the Marks without the express written consent of Dup15q Alliance.
At times, Dup15q Alliance may grant limited-use licensing agreements to those individuals or groups who wish to help further the mission of Dup15q Alliance. Solely at the discretion of Dup15q Alliance, limited permission for use of Dup15q Alliance’s Marks may be granted for those projects which provide a substantial benefit to Dup15q Alliance or the chromosome 15q duplication syndrome community in general. For consideration, please submit, in writing, a letter of intent, which details how the Dup15q Alliance’s Marks will be used, the length of time they will be used, and the benefit of the project to Dup15q Alliance or the chromosome 15q duplication syndrome community to info@dup15q.org at least 45 days prior to launch.
Letters of intent may also be sent to: Dup15q Alliance, PO Box 674, Fayetteville, NY 13066, or send an e-mail to info@dup15q.org.
