Privacy Policy

The FH Foundation 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 have made 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@thefhfoundation.org or you use the contact/comment form, your email address and other information included in your email may be forwarded to the appropriate person(s) within The FH Foundation or our professional advisors for a response. A copy of your correspondence may be retained at the The FH Foundation home office and also by the responding individual.

The FH Foundation has established and maintains a mailing database. The mailing list includes families of affected individuals, friends, relatives, physicians, scientists, contributors and others interested in The FH Foundation. The FH Foundation 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 The FH Foundation 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 FH Foundation web site provides links to other sites that may be of interest. The FH Foundation is not responsible for the privacy practices or content of other such web sites.

The FH Foundation 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 The FH Foundation board members and other individuals who have a need to use such information in the course of their work on approved projects at The FH Foundation. In all instances, this work will be directly overseen by a member of The FH Foundation Board of Directors. All individuals will be instructed in the confidentiality requirements of the organization.