Privacy Policy

This is the official Web site of Periodic Paralysis Association Inc. Our postal address is 155 West 68th Street, Suite 1732, New York, NY 10023. We can be reached via e-mail at:  lfeld @ cfl . rr . com [spaces left deliberately to avoid spam], or you can reach us by phone at (914) 661-1726.

When you visit our Web site, our server does not automatically capture your domain name or e-mail address.

The PPA gathers only information volunteered by the visitors to the site, or provided voluntarily by members of the Periodic Paralysis Association. We collect the e-mail addresses of those who communicate with us via e-mail, aggregate information on which pages visitors access, and gather information volunteered by the visitor, such as on-line donation data, survey information and/or listserv and membership registrations. The information we collect is used to improve the content of our Web site, to advise visitors of new on-line material, and to provide occasional updates about our research efforts and what's new at PPA.  The information we collect is used to stay in touch with members and visitors, to advise them of new on-line material, to provide updates about PPA's research and education activities, and announcements of new services or information offered by the PPA. Information generated through our Web site is not shared with other individuals or organizations for commercial purposes.

If you don't wish to receive future e-mail communications from MDA, please let us know by sending an e-mail to lfeld @ cfl . rr . com [spaces left deliberately to avoid spam] and include the word "remove" in the subject line.

One of the leading concerns expressed by individuals regarding genetic information and genetic disorders is the issue of privacy. The PPA takes this concern very seriously. Membership in the PPA is informal and non-voting. To protect the interests of our members and their families, and to avoid any potential misuse of personal information, the PPA does not publish a membership registry.  Confidentiality of data relating to individual members, and visitors to this website is conscientiously respected. We do not store credit card numbers on our servers.

The PPA retains all personal information in secure files, insuring protection from inadvertent or purposeful access by anyone other than authorized PPA staff. The PPA does not allow or participate in any commercial activity or solicitation. All personal information, including names and contact information is kept confidential. Any request for contact with members for any reason from an outside researcher or other party is forwarded to the appropriate individual or individuals who may be interested in responding, and who would then be able to respond at their own discretion. The PPA does not provide member lists to any individual or organization.

If the PPA is involved in a research project with an outside entity, arrangements for individual participation are made privately with the individual. In such cases, the PPA abides by standard guidelines for informed consent as outlined by the Alliance for Genetic Support Groups, the Ethical, Legal, and Social Implications Branch of the National Center for Human Genome Research, and the Office of the Director, Office for Protection from Research Risks, National Institutes of Health.

 
If you supply us with your postal address on-line, you may receive periodic mailings from us with information about our programs, upcoming events and/or opportunities to support our efforts. If you don't want to receive such mailings, please send an e-mail to lfeld @ cfl . rr . com [spaces left deliberately to avoid spam], include the words "no mail" in the subject line, and provide us with your exact name and address. We'll be sure your name is removed from our mailing list.

People who supply us with their telephone numbers on-line may receive a call from us if there are questions regarding orders placed on-line, donations made via credit card, or questions regarding membership or listserv status.