Posted: July 18th, 2018


The Scleroderma Research Foundation (the “Foundation”, “we” or “us”) is committed to maintaining the privacy of your personal information collected through its websites, and, any of its subdomains, or any related sites or applications (together, the “Website”). This Privacy Policy discloses the Foundation’s information collection and dissemination practices in connection with the Website and applies solely to the information that we collect through the Website. This Privacy Policy does not address personal information that you provide to us in other contexts (e.g., through a business or investment relationship not handled through the Website).


By using the Website, you signify your acceptance of this Privacy Policy. If you do not agree to the terms of this Privacy Policy, please do not use this Website. Your continued use of the Website following the posting of changes to these terms will mean that you accept those changes.


This Privacy Policy covers how the Foundation treats personally identifiable information (“PII”) that it collects and receives through this Website. PII is information about you that is personally identifiable and is not otherwise publicly available. PII can include, e.g., your full name, e-mail address, Internet Protocol (IP) address, photo and username.


How Personal Information Provided By You May Be Used. Except as described in this Privacy Policy, the Foundation only collects your PII through this Website when you choose to provide such information, such as when completing a survey, sending an email enquiry to us, contributing online, or registering for or contributing to a participant in an event or program online. The information we collect is used to provide you with information about our programs. We generally respond to you by postal service mail, email, or telephone—depending on your requests and our resources.

If you provide your postal address, telephone number, or email address to the Foundation online, you may receive any of the following periodic contacts from us:

  • Electronic or postal mailings with information about scleroderma and the Foundation’s programs and events;
  • Electronic or postal mailings to invite you to join help the Foundation achieve its mission;
  • Telephone contact to respond to your inquiries or invite you to help the Foundation achieve its mission; and
  • Electronic or postal mailings to respond to your questions, comments or suggestions.

Surveys. From time-to-time our Website may request information via surveys. Participation in these surveys is completely voluntary and you may choose whether or not to participate and therefore disclose this information. Information requested may include queries pertaining to our activities, research or patient support programs. Survey information will be used for purposes of monitoring or improving the content, use and satisfaction of this Website.

Sharing of PII. The Foundation will not sell, rent, license, or trade your PII with third parties for their own direct marketing use unless we receive your express consent to do so. Unless you give us permission to do so, the Foundation will not share your PII other than as specified in this Privacy Policy. The Foundation does not make telephone numbers, postal or email addresses that you have voluntarily provided available to other organizations. The Foundation does not sell or otherwise share contact information.

Disclosures Under Special Circumstances. We may disclose your PII to respond to subpoenas, court orders, legal process or governmental regulations, or to establish or exercise our legal rights or defend against legal claims. We may also disclose your PII if we believe it is necessary to share information in order to investigate, prevent or take action regarding illegal activities, suspected fraud, situations involving potential threats to the physical safety of any person, or as otherwise required by law.

Business Transfers. We may share your PII with other business entities in connection with the sale, assignment, merger or other transfer of all or a portion of the Foundation’s business to such business entity. We will require any such successor business entity to honor the terms of this Privacy Policy.


Each time a visitor comes to the Website, the Foundation collects some information to improve the overall quality of the visitor’s online experience.

Web Server Logs, IP Addresses and Browser Information. An Internet Protocol (“IP”) address is a number that automatically identifies the computer/device you have used to access the Internet. The IP address enables our server to send you the web pages that you want to visit, and it may disclose the server owned by your Internet Service Provider. The Foundation may use IP addresses to conduct website analyses and performance reviews and to administer the Website. When you visit our Website, your web server automatically logs (records) domain name and standard information about the operating system and web browser you are using, as provided by your web browser.

Cookies and Web Beacons. To track your progress through the Website and to help us evaluate usage of the Website, the server places a "cookie"—a small text file with an identification number—on your machine. This automatically collected information is used for statistical purposes to help us manage our Website, but it does not identify you in any way.

Cookies in and of themselves do not personally identify users, although they do identify a user’s computer. Many websites use cookies as a standard practice to provide useful features when a user visits the website and most web browsers are set up to accept cookies. The Foundation uses cookies to improve your online experience when visiting the Website.You can set your browser to refuse cookies, but some portions of the Website may not work properly if you refuse cookies. Some of the Website’s web pages may use web beacons in conjunction with cookies to compile aggregate statistics about website usage.

We may also use services hosted by third parties, such as Google Analytics, a web analytics service provided by Google, Inc. (“Google”), to assist in providing the Services. Google Analytics uses cookies to help us analyze how users use the Services. The information generated by the cookie about your use of the Website (including your IP address) will be transmitted to, and stored by, Google on their servers. Google will use this information for the purpose of evaluating your use of the Services, compiling reports on website activity for us and providing other services relating to website activity and Internet usage. Google may also transfer this information to third parties where required to do so by law, or where such third parties process the information on Google’s behalf. Google will not associate your IP address with any other data held by Google. You may refuse the use of cookies by selecting the appropriate settings on your browser, however please note that if you do this you may not be able to use the full functionality of the Services. By using the Services, you consent to the processing of data about you by Google in the manner and for the purposes set out above.


The Foundation is the sole owner of the information collected on the Website. We only have access to/collect information that you voluntarily give us via completing a survey, sending an email enquiry to us, contributing online, or registering for or contributing to a participant in an event or program online. As noted above, we will not sell or rent this information to anyone.


The Website may contain links to third-party websites that may offer information of interest. This Privacy Policy does not apply to those websites, and the Foundation recommends reviewing those websites’ privacy policies individually. The Foundation assumes no responsibility for any material outside of the Website, including any website that may be accessed through a link from the Website.


The Foundation takes measures it believes are reasonably designed to protect the PII it receives from you from unauthorized access, use and alteration. We believe, however, that a persistent attacker with sufficient resources would be able to defeat our security measures. Therefore, we provide no guarantee that your PII will remain secure.


Some Internet browsers include the ability to transmit “Do Not Track” signals. Since uniform standards for “Do Not Track” signals have not yet been adopted, the Foundation does not process or respond to “Do Not Track” signals.


The Foundation does not knowingly collect or solicit PII from anyone under the age of 18. In the event that we learn that we have collected personal information from a child under age 18, we will delete that information. If you believe that we might have any such information from or about a child under 18, please contact us at


California Civil Code Section § 1798.83 permits users of our Website that are California residents to request certain information regarding our disclosure of PII to third parties for their direct marketing purposes. To make such a request, you may contact us by e-mail at


The Website and the services upon which the Website is hosted are located in the U.S. and are intended only to be used by individuals in the U.S. PII you submit using the Website will be transferred to and stored in the United States. By visiting the Website and submitting PII, you acknowledge this transfer.


You may review and request changes to your PII that the Foundation has collected, including the removal of your PII from the Foundation’s databases in order to prevent receipt of future communications, using any of the following options:

  • You may use the “Contact” form on our Website or send your request via e-mail to:
  • You can call us at 1-800-441-CURE(2873); or (415) 834-9444
  • You can write to us at: Scleroderma Research Foundation, 220 Montgomery Street, Suite 484, San Francisco, CA 94104.

If you are contacting us to ask us to stop sending you communications, please state your wishes clearly, referencing the following contact types:

  • No email;
  • No postal service mail for fundraising purposes;
  • No telephone calls for fundraising purposes.

This Privacy Policy may be revised from time to time as we add new features and services, as laws change, and as industry privacy and security best practices evolve. We display the date of the Privacy Policy in the upper right corner so that it will be easier for you to know when there has been a change. If we make any change to this Privacy Policy regarding use or disclosure of PII, we will provide advance notice on this Website. Small changes or changes that do not significantly affect individual privacy interests may be made at any time and without prior notice.

If you believe that your privacy rights have been violated, you may file a complaint with the Scleroderma Research Foundation, 220 Montgomery Street, Suite 484, San Francisco, CA 94104. You also have the right to submit a complaint to the Secretary of the U.S. Department of Health and Human Services via the Office for Civil Rights, 90 7th Street, Suite 4-100, San Francisco, CA 94103; telephone: (415) 437-8310; Fax (415) 437-8311; TDD (415) 437-8311. The Foundation will not retaliate against you if you file a complaint.


All medical information on this Web site has been reviewed for accuracy by physicians. However, the information posted here by the Scleroderma Research Foundation or any third party should not be considered medical advice, nor is it intended to replace consultation with a qualified physician. The Scleroderma Research Foundation does not endorse or recommend any particular medication, physician, product, service, equipment or treatment. Scleroderma often varies substantially from one patient to another, and disease management must be tailored by a qualified physician for each individual case.

Any hypertext link contained in the Scleroderma Research Foundation Website is provided for convenience only. Scleroderma Research Foundation (i) possesses no control whatsoever over such links or any sites linked thereby, (ii) makes no express or implied warranties, representations or endorsements of any kind regarding any linked site, and (iii) assumes no liability of any kind for any information contained in any linked site.


In consideration of your accessing the Scleroderma Research Foundation’s Website, you agree that (i) under no circumstances shall the Scleroderma Research Foundation be liable for any damages whatsoever in connection with, arising out of or resulting from your use of the Scleroderma Research Foundation’s Website or any information contained in the Scleroderma Research Foundation’s Website and (ii) you will defend, indemnify, save and hold harmless the Scleroderma Research Foundation from and against all suits, claims, demands, causes of action, judgments, damages, losses, liabilities and expenses arising out of or resulting from your use of the Scleroderma Research Foundation’s Website or any information contained therein.

Unless otherwise indicated, all information contained in the Scleroderma Research Foundation Website is copyrighted by and proprietary to the Scleroderma Research Foundation, and may not be reproduced, published, transmitted or distributed in any manner without the prior express, written consent of the Foundation, although you may download one (1) copy of the information contained in the Foundation’s Website for your own personal, non-commercial use.

The Scleroderma Research Foundation may modify this Disclaimer, or any other information contained in the Foundation’s Website, at any time without notice, and it is your responsibility to apprise yourself of the most current disclaimer/information.


If you have any questions about this Privacy Policy or about the Foundation’s handling of your information, please contact us

Copyright Information

All information on this site is the property of the Scleroderma Research Foundation. Copyright © 1988-2018, Scleroderma Research Foundation. All rights reserved.