The Cystinosis Research Foundation understands and respects the importance of protecting our donors’ privacy. The following policy is intended to help you understand how we use the information we collect.
CRF understands the importance of protecting the privacy of personal information, especially in today’s increasingly electronic environment. We do not sell, share or trade our donors’ names or personal information with any other entity, nor send mailings to our donors on behalf of other organizations.
- The personal information you provide when making a donation via personal check, online or registering for an event will not be disclosed to any unauthorized third parties and is kept private.
- The Foundation collects the following information through our secure online financial-transaction pages: name, address, e-mail address, phone number, and credit card information. This personally identifiable information is used to acknowledge receipt of your donation for tax purposes and to include you on the Foundation’s mailing list if you choose to join it.
- CRF is committed to the principle of confidentiality of information for its activities and programs. CRF Board Members and volunteers have an obligation to respect the privacy of all personal information from research studies, databases or organizational activities.
- CRF believes in safeguarding personal information and ensuring that donor privacy is protected. Your name, address and any other personal data you provide will be used only by CRF to keep you informed of our activities including Cystinosis Magazine, special events, and e-newsletters. If at any time you choose not to receive these communications, you may contact us and we will remove your name from our mailing list.
- Your mailing address, telephone number, and/or email address, will be provided to our parent mentors only with your permission. Information on parents of newly diagnosed children is also shared with new parent mentors only with your permission.
- The Cystinosis Research Foundation goes to great lengths to protect the confidentiality and integrity of any Personal Information you share with us over the Internet. We treat personal data such as credit card information as critical assets that must be guarded at all times against loss and unauthorized access. To ensure the security of credit card and personal information, our Web site employs industry-standard security methods.
Other Web Sites:
- Our Site contains links to other Web sites. Please note that when you click on one of these links, you are entering another Web site for which the Cystinosis Research Foundation has no responsibility. We encourage you to read the privacy statements on all such sites as their policies may be different than ours. We are not responsible for the privacy and security practices of any other Web site or the nature of the content contained therein.
- CRF’s Web site is designed to collect a variety of technical information regarding traffic to our site. Information such as an IP address is collected in order to analyze volume, trends, and administer the site. IP addresses are not linked to personally identifiable information.
The Cystinosis Research Foundation
18802 Bardeen Avenue
Irvine, CA 92612
You can also send an email to: firstname.lastname@example.org