The PAF Web Site Privacy Policies
The Propionic Acidemia Foundation is committed to protecting your privacy. A summary of our privacy procedures, including issues of confidentiality, follows.
The Propionic Acidemia Foundation website is designed for educational purposes only and is not intended to serve as medical advice. The information provided on this site should not be used for diagnosing or treating a health problem or disease. It is not a substitute for professional care. If you suspect that you or your children may have Propionic Acidemia, you should consult your health care provider.
To make this notice easy to locate, we make it available as a link on the bottom of every page on the PAF website, and at every point where personal information may be requested. We define personal information to include: name, e-mail name, web address, physical address, phone number, survey responses, registry information and the content of your correspondence with us.
When you contact us, your email address, web name and other information included in your email may be forwarded through the site to the appropriate person(s) within The Propionic Acidemia Foundation for a response. Copies of your correspondence may be retained at the PAF home office and by the responding individual. The Propionic Acidemia Foundation will establish and maintain lists of our members including families, physicians, scientists, contributors and others interested in Propionic Acidemia to allow us to communicate with you. These lists will not be sold, rented or given to any third party for commercial use, nor will we release these lists to any third party for any reason. However, if the Propionic Acidemia Foundation sees a need or a possible benefit to you of making your personal information available to a third party, we will not do so without first identifying the recipient and providing a full explanation to you, and receiving your permission to do so in advance of each instance.
The Propionic Acidemia Foundation links to other sites that may be of interest to those who use our site. The PAF is not responsible for the privacy practices or the content of such Web sites.
The Propionic Acidemia Foundation is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programs. PAF Board Members and Volunteers have an ethical and legal obligation to respect the privacy of all agency and participant information. Furthermore, this obligation extends to protecting and maintaining the confidentiality of all information derived from surveys, studies, databases, blood banks, patient registries, or organizational activities.
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 PAF Board members and officers and to individuals who have a need to use such information in the course of their work on approved projects for and overseen by the Propionic Acidemia Foundation and who have been instructed in the confidentiality requirements of the organization. If you would like to review collected personal information and/or request corrections, please email [email protected] or mail us at the listed address.
Procedures for Maintaining Confidentiality
1. All individuals involved with PAF programs or data, whether in a staff, volunteer or consultant capacity, shall sign an assurance of confidentiality, which will be kept on file at the PAF home office.
2. All individuals working with PAF in any capacity shall keep completely confidential the names and individuals contained in any data files, including these individuals’ affiliation or genetic condition. All information or opinions, whether the information is learned directly or indirectly, shall also be kept confidential. Individuals shall exercise reasonable caution to prevent access by others to agency or individual consumer information in their possession.
3. Any data containing personal identifiers (names, etc.) shall be kept in a secure area when not being used. Reasonable caution shall be exercised in limiting access to information to only those persons who are working with the Propionic Acidemia Foundation, on a project or as part of other organizational activities, and who have been instructed in the applicable confidentiality requirements for the organization.
4. When records or forms with identifiers are to be transmitted to another party, such as for data entry, any outside parties shall be informed of these procedures and shall sign an assurance of confidentiality form.
If you have any questions or concerns please email [email protected]