Privacy Policy

NephCure Kidney International, a nonprofit organization, is committed to protecting the privacy of the users of its NephCure Kidney Network Patient Registry (the “NephCure Kidney Network”) and its website located at www.nephcurekidneynetwork.org (the “Website”). The Website is owned and operated by the NephCure Kidney International. NephCure Kidney International respects your privacy and has written the Privacy Policy so that you are aware of the information NephCure Kidney International collects from you, how that information is protected, and how it is used.

You must read this Privacy Policy (the “Privacy Policy”) and the Website Terms of Use (the “Terms and Conditions”) prior to using any portion of the Website. By using the Website, you agree to all the terms of the Privacy Policy and Terms and Conditions. We reserve the right, in our discretion, to change, modify, add or remove portions of this Privacy Policy at any time and from time to time, without prior notice to you. All revisions will be posted to the Website. We urge you to review this Privacy Policy frequently for changes. Your continued use of the Website means that you accept those changes.

This Privacy Policy is effective as of March 1, 2014 (the “Effective Date”).

1. General

When you contact the NephCure Kidney Network Patient Registry Manager at registry@nephcure.org This e-mail address is being protected from spambots. You need JavaScript enabled to view it or you use the contact form on the Website, your email address and other information included in your email, may be forwarded to the appropriate person(s) within NephCure Kidney Network, the NephCure Kidney International or our professional advisors for a response. A copy of your correspondence may be retained at the NephCure Kidney Network /NephCure Kidney International home office and also by the responding individual.

If you have any questions or comments regarding the Privacy Policy, or you feel that the NephCure Kidney International is not abiding by its posted Privacy Policy, please contact us at:
Address: The NephCure Kidney International, 150 S Warner Rd, Suite 402, King of Prussia, PA 19312 Phone: 1-866-NEPHCURE (1-866-637-4287 or 610-540-0186) Fax: (610) 540-0190 Email:
registry@nephcure.org This e-mail address is being protected from spambots. You need JavaScript enabled to view it

2. Collection, Use and Disclosure of Information

a. Collection of Personal Information. All of the information you provide to the NephCure Kidney Network (e.g., name(s), email address, mailing address, phone number, survey responses, registry information and non-public information included in your correspondence with us) will be maintained in a secure database, and any information that could identify you will not be shared without your express written consent, unless otherwise required by law.

b. Use and Disclosure of Information. The goal of the NephCure Kidney Network is to make the information you provided searchable, while protecting your identity. De-identified data (information where all personal identifiers such as name and address has been removed) gathered from this profile will be made available to registrants of the Website in the hope that analyses of a substantially larger database will support breakthroughs and clinical trials that could lead to better treatments and care management. NephCure Kidney Network will perform the searches for specific questions within the registry and provide de-identified reports back to you or the requesting party.

De-identified information may be disclosed to third parties and otherwise used in accordance with legal requirements.

The NephCure Kidney International may employ independent contractors, vendors and suppliers (“Outside Contractors”) to provide specific services and products related to the NephCure Kidney Network and Website or to the services provided on the Website, including but not limited to, performing general statistical analysis, maintaining an email suppression list as may be required by state and/or federal law, fraud screening, testing and implementation of special services to users, and developing applications for the Website and the services provided on the Website. These Outside Contractors may have limited access to information collected on the Website, including protected health information and personally identifiable information. In the course of providing such products or services, outside contractors will be contractually obligated to protect the privacy and security of all protected health information and personally identifiable information.

3. Mailing List and Withdrawal of Information

NephCure Kidney International has established and maintains a mailing database. The mailing list includes families of affected individuals, friends, physicians, scientists, contributors and others interested in Idiopathic Nephrotic Syndrome. NephCure Kidney International will never release our mailing list or the names of our member families to any outside organization or third party unless required to do so by law. However, if an outside organization sends us information for distribution to NephCure Kidney Network families, we may mail it to you.
At any time, you have the right to withdraw your information from the NephCure Kidney Network database. You may exercise this right by contacting the NephCure Kidney Network manager at:
registry@nephcure.org This e-mail address is being protected from spambots. You need JavaScript enabled to view it , and your profile will be removed.

4. Protection of User Information

All users are required to review and abide by the Website Terms and Conditions and the Privacy Policy. The NephCure Kidney International will use commercially reasonable methods to protect the security of information and data submitted to the Website. We employ a third party (Arbor Research Collaborative for Health) that implements best practices from networking to secure servers in order to protect data from intrusion. Users should keep in mind, however, that no internet transmission is ever 100% secure or error-free. Where you use passwords, ID numbers, or other special access features on the Website, you should take special care to safeguard them.

5. Ownership of Information

All of the information you provide to the NephCure Kidney Network in connection with the Website is owned by the NephCure Kidney International. Your information may contribute to the development of inventions, drugs or commercial products from which others may derive economic benefit. You will have no rights to any inventions, commercial products or other such discoveries and you will receive no benefit, economic or otherwise.

6. Third Party Notifications/Advertising

The NephCure Kidney International reserves the right, in its discretion, to allow third parties to provide advertising or notices when you visit the Website. These companies may use information you provided on this Website (excluding your name, address, email address or telephone number) in order to provide advertisements or relevant notifications on the Website about goods and services that may be of interest to you. The NephCure Kidney International will require such companies to follow best practices with respect to the collection and use of non-personally identifiable information; however, the NephCure Kidney International assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.

7. Cookies

When you visit the Website, we may send one or more cookies to your computer that will uniquely identify your browser. In addition, in the course of serving advertisements to the Website, our third-party advertisers may place or recognize a unique "cookie" on your browser. A cookie is a piece of data stored on the user's hard drive containing information about the user. Cookies may be used by the NephCure Kidney International to enable it to track and target the interests of users to enhance their experience on the Website. Usage of a cookie is in no way linked to any personally identifiable information while on the Website. If a user rejects the cookie, he or she may still use the Website. Some of the NephCure Kidney International’s business partners and sponsors use cookies, but the NephCure Kidney International has no access to or control over these cookies.

8. Log Files; Web Beacons

The NephCure Kidney International may use log file information sent by your web browser (which may include information such as your web request, Internet Protocol (“IP”) address, browser type, browser language, referring/exit pages and URLs, platform type, and other information) to analyze trends, administer the Website, track the movement of users, and gather broad statistical information for aggregate use. IP addresses are not linked to personally identifiable information. The NephCure Kidney International may also employ “web beacons” (also known as clear gifs) to track online usage patterns of users. This information is not linked to personally-identifiable information. Web beacons may also be employed for tracking and receipt purposes in connection with web-based emails we send to users.

9. Website Links

The Website may contain links to other web sites. This Privacy Policy applies solely to information collected on or submitted to the Website. The NephCure Kidney International is not responsible for the privacy practices of other sites linked to the Website. “NephCure Kidney Network” encourages users to read the privacy policies of websites and third party advertisers when they connect to them through the Website.

10. Communications from the NephCure Kidney International or NephCure Kidney Network

From time to time, the NephCure Kidney International or other related entities will notify users of updates and other valuable information about the NephCure Kidney Network, the Website and related clinical and research information. By using the Website, or registering or subscribing for services provided on or through the Website, users consent to being contacted by the NephCure Kidney International and related entities, and to receiving such updates and information. The NephCure Kidney International encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, the NephCure Kidney International cannot control, and assumes no responsibility for, any contact of users by related entities, including its business partners. In the case of emails coming directly from the NephCure Kidney International, such emails will clearly be from the “NephCure Kidney International” or the “NephCure Kidney Network” and will include instructions on how to unsubscribe from future emails.

11. Required Disclosures

You understand and agree the NephCure Kidney International may disclose information provided by you if in its good faith belief such disclosure is required by applicable law.

12. Contact Us; Member Accounts

If you elect to contact the NephCure Kidney International through contact information provided on the Website, or register for an account, you may be asked for any of the following: name, password, e-mail address, e-mail subject and a message containing your inquiry (in the case of a “contact us” inquiry), and certain profile and account information (in the case of a member account registration). The NephCure Kidney International stores this data in order to reply to the submitted inquiry or to establish and service the member account. The submitted information is then subject to the terms detailed in this Privacy Policy.

13. Children under the Age of Thirteen (13)

The NephCure Kidney International is unable to prevent children under the age of thirteen (13) from visiting the Website; however, no part of our Website is directed at or intended for persons under the age of thirteen (13). If you are under the age of thirteen (13), please do not access the Website at any time or in any manner. In order to comply with the Children's Online Privacy Protection Act, the NephCure Kidney International will not knowingly collect personally identifiable information from children under the age of thirteen (13). By providing personal identifiable information through the Website including, but not limited to, your name and e-mail address, you represent and warrant that you are at least thirteen (13) years of age and that you agree to comply with the Privacy Policy. If, at any time, the NephCure Kidney International learns that personally identifiable information has been collected from persons under the age of thirteen (13) without verified parental consent, the NephCure Kidney International will take the appropriate steps to delete such information.

14. Special Notice to California Residents

Under California Law SB 27, California residents have the right to receive, once a year, information about third parties with whom we have shared information about you or your family for their marketing purposes during the previous calendar year, and a description of the categories of personal information shared. To make such a request, please send an email to registry@nephcure.org This e-mail address is being protected from spambots. You need JavaScript enabled to view it and please include the phrase “California Privacy Request” in the subject line, and provide us with your name, address and email address. We will respond to you within thirty days of receiving such a request.

15. Notification of Material Changes to this Privacy Policy

You should review the Privacy Policy whenever you use the Website in order to be aware of the ways that your information is used. “NephCure Kidney Network” reserves the right to change the Privacy Policy at any time, without prior notice.