SCOPE
The PRP Alliance (PRPA) is a nonprofit 501(c)(3) tax-exempt organization devoted to assisting individuals diagnosed with the pityriasis rubra pilaris (PRP) and their caregivers. PRPA provides information and education to both the lay and the professional communities, advocates on behalf of its members in the political and healthcare arenas, and serves as a “bridge” between the PRP community and the medical profession.The PRPA website is an important tool in carrying out our mission, and we want you to be comfortable and confident when you use the website. For that reason, we have adopted this privacy policy.The following are basic guidelines are in place to ensure a civil, respectful discussion that adds to the richness of the PRPA’s communications dialogue. This privacy statement discloses the privacy practices for PRPA and for those persons who utilize any PRPA communications. The PRPA is dedicated to protecting your privacy and ensuring your ability to use our publications and communications with confidence.
Your privacy is important to us. To protect your privacy, we provide this notice explaining our information practices and the choices you can make about the way your information is collected and used.
INFORMATION USE
PRPA may collect information from users through several points on the web such as making a donation, merchandise sales, ordering free materials, signing up for the PRPA mailing lists or eNewsletters, and online event registrations.
- Personal financial information in the form of a credit card number and expiration date are only collected if a site user wishes to make an online donation or purchase merchandise through PRPA online. This information is not maintained by PRPA when entered online.
- All online transactions are securely transmitted using SSL encryption and PayPal.
- User information submitted through PRPA website is only used for the purposes for which it was collected.
Advertising Policy — PRPA does not host any form of advertising from our website or email communications.CookiesPRPA does not use cookies to capture any information from our website or email communications.
COMMUNICATIONS
Newsletter or Mailing List — If a user wishes to opt-in and subscribe to our e-newsletter, mailed newsletter, or to be added to a mailing list of any kind, we ask for contact information as well as other information to populate a contact record; these items consist of a working email address, mailing address, questions related to how you learned about the PRPA, the connection to the PRPA, and some disease specific questions used to help plan future efforts.
SHARING
Legal Disclaimer
Though PRPA makes every effort to preserve user privacy, we may need to disclose personal information when required by law wherein we have a good- faith belief that such action is necessary to comply with a current judicial proceeding, a court order or legal process served on our website.PRPA may need to share personal information with third parties in other limited circumstances. For example, we may release personal information to third parties to perform services on our behalf such as: advising you of our upcoming events, partnership offers, volunteer opportunities, and health-related information or processing credit card payments. PRPA may also make your name and contact information available to other nonprofit organizations whose services or activities may be of interest to you. However, third parties retained by PRPA to provide such services are obligated to maintain the confidentiality of this information and are not authorized to use this information for any purpose other than providing those services. If you would like to opt-out of having PRPA share your name and postal address with third-party organizations, please email bill.mccue@prpAlliance.org and type “do not share” in the subject line of your email.The PRPA will not sell, loan, publicize, or otherwise share its mailing list or other personal information of current or former members, patients, or donors with any other organization except on a case-by-case basis and with specific written permission from the member or individual on the mailing list.The history of contributions by donors will be held in absolute confidence and will not be revealed to anyone beyond staff and board members without explicit written permission from the donor, with the exception of the name recognition within the annual report. Donors have the option to remain anonymous and when noted will be excluded from such lists.The PRPA obtains prior permission before using the names, photos or video of individuals, organizations, or companies in ways that imply endorsement of program or fundraising activities.
Third Party Intermediaries
PRPA uses third-party transaction services to process online donations.PRPA may provide the option of receiving certain of its booklets, brochures, and fact sheets by mail through request forms on our websites. These materials are shipped by the US Postal Service, United Parcel Service or Federal Express.Additional services such as ordering products from the PRPA e-store will also utilize third-party transactions services to process credit card transactions.We will only provide these companies the information they need to deliver the service and prohibit them from using that information for any other purpose. These companies/organizations do not share or use personally identifiable information that may be obtained from these transactions for any secondary purposes.
Notification of Changes
If PRPA changes its privacy policy, changes to this privacy statement will be posted, with prominent links to the new policy positioned on the PRPA homepage (prpAlliance.org), and other places we deem appropriate, so our users are always aware of what information we collect, how we use it, and under what circumstances, if any, we disclose it. PRPA will use information in accordance with the privacy policy under which the information was collected.
Contacting Us
Effective management of our email list to honor the interests of our contacts is a founding principle of our email communications program. Whether you would like to be removed from our eNewsletter or any mailing all of our communications include an “unsubscribe” option.To be removed from our direct mail or telemarketing lists email bill.mccue@prpAlliance.org and use “Request for Removal” in the subject line and include your name, address, email address and you will be placed on our “do not mail” list and will no longer receive any communications.If users have questions or concerns regarding this statement, they should first contact us by email at bill.mccue@prpAlliance.org or by postal mail at:
Bill McCue, President
PRP Alliance, Inc.
1500 Commerce Drive
Plano, TX 75093-2640
Additional Information
This privacy policy is personal between you and us, and no one else shall be deemed a third-party beneficiary of this policy.USE OF THIS SITE SIGNIFIES YOUR AGREEMENT TO THE TERMS OF USE AND THIS PRIVACY POLICY.PRPA reserves the right to change this policy at any time. Since any changes will be posted on this page, we encourage you to check this page regularly. Your continued use of prpAlliance.org will constitute your acceptance of such changes. If you have any further questions regarding this privacy policy or the use of your personal information under this privacy policy, you can contact us at the following postal address:
Bill McCue, President
PRP Alliance, Inc.
1500 Commerce Drive
Plano, TX 75093-2640