The Cystinosis Research Foundation Privacy Policy

The Cystinosis Research Foundation has always taken great care to protect your data and privacy, that’s why, in support of the European Union’s new GDPR regulations that went into effect, May 25, 2018 we have taken extra precautions and updated our privacy policy to increase transparency. We want to ensure you have full control over your personal data and make it clear that CRF has not and will not sell your data and only shares it with authorized parties.

The Cystinosis Research Foundation reserves the right at any time and without notice to change this Privacy Policy simply by posting such changes on our Web site. Any such change will be effective immediately upon posting. The last date on which this Privacy Policy has been updated is noted above.

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 information from our mailing list.


CRF collects the following information through our secure online donation or registration pages:

  • your name
  • postal address
  • e-mail address
  • phone number
  • 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 agree.

CRF may need to share your information with third parties in limited circumstances. For instance, we may share the information you provide to us, including personally identifiable information, with our auditors, consultants, or others hired by us to assist in providing financial, or marketing activities on our behalf. We require these parties to use such personally identifiable information only for the specifically intended and authorized purpose, on behalf of CRF and consistent with this Privacy Policy.


CRF 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.

We have partnered with Authorize.Net, a leading payment gateway since 1996, to accept credit cards safely and securely for our supporters and donors. The Authorize.Net Payment Gateway manages the complex routing of sensitive customer information through the electronic credit card processing networks. adheres to strict industry standards for payment processing, including:

  • 128-bit Secure Sockets Layer (SSL) technology for secure Internet Protocol (IP) transactions.
  • Industry leading encryption hardware and software methods and security protocols to protect customer information.
  • Compliance with the Payment Card Industry Data Security Standard (PCI SS).
  • Cystinosis Research Foundation is registered with the Authorize.Net Verified Merchant Seal program.

For additional information regarding the privacy of your sensitive cardholder data, please read the Authorize.Net Privacy Policy.

CRF does not store credit card information in an electronic form or otherwise in our Foundation database. We retain your personal data for only as long as needed for business, legal, or tax purposes.

Many contacts are entered into the database at the request of third party CRF family partners. Periodically your mailing address, telephone number, and/or email address will be shared with those CRF family partners to ensure information kept on file is current and accurate.

Information from parents of newly diagnosed children may also be shared with CRF new parent mentors if permission is given to do so.

Our website contains links to other websites. Please note that when you click on one of these links, you are entering another website 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 website or the nature of the content contained therein.

CRF’s website 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.


If you have any questions or comments about our privacy policy, feel free to ask, or if you would like to be removed from our database please send an email an email to: and we will respond as soon as possible. Or you can contact us at the address below:

The Cystinosis Research Foundation
19200 Von Karman Ave.
Suite 920
Irvine, CA 92612
(949) 223-7610