Ring14 USA 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 info@ring14usa.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 Ring14 USA or our professional advisors for a response. A copy of your correspondence may be retained by responding individual at Ring14 USA.
Ring14 USA 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 14 syndromes. Ring14 USA will never release our mailing list or the names of our member families to any outside organization or third party unless explicitly consented by the member, e.g. sharing with Ring14 International. However, if an outside organization sends us information for distribution to Ring14 USA 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 Ring14 USA website provides links to other sites that may be of interest. Ring14 USA is not responsible for the privacy practices or content of other such websites.
Ring14 USA 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 Ring14 USA 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 Ring14 USA Board of Directors. All individuals will be instructed in the confidentiality requirements of the organization.