Privacy Policy

This website is owned and operated by or on behalf of the National Scleroderma Foundation. We recognize that visitors to our site may be concerned about the information they provide to us, and how we treat that information. This Privacy Policy addresses those concerns. This policy may be changed or updated from time to time.

If you have questions about our Privacy Policy, you can contact us at:
National Scleroderma Foundation
300 Rosewood Drive Suite 105
Danvers MA 01923

Or email us.

We are available to answer your questions or hear your concerns.

The National Scleroderma Foundation’s Official Privacy Policy

The National Scleroderma Foundation values its relationship with patients, families and supporters. We are careful to protect that relationship by respecting your privacy and the information you share with us.

Our privacy policy is explained below. This policy was last reviewed November 2015. If you have any questions or comments, please contact us at our toll-free number (800) 722-HOPE (4673), email at, or by mail at: National Scleroderma Foundation, 300 Rosewood Drive, Suite 105, Danvers MA 01923.

About Our Information-Gathering Practices

We never give, sell or rent our mailing lists.

Regardless of whether you contact us by phone, email, or register at our website, your name will not be shared with others outside of the National Scleroderma Foundation and its authorized agents. Exceptions to this policy include your approval or request to share your information, legal processes, or when we believe that disclosure is necessary to protect you or our rights as required by law. This includes, but is not limited to, mailing addresses, telephone or fax numbers, and email addresses.

This policy applies to all information received by the National Scleroderma Foundation, both online and offline, on any Platform ("Platform", includes the National Scleroderma Foundation website and mobile applications), as well as any electronic, written, or oral communications.

To the extent any donations are processed through a third-party service provider, our donors’ information will only be used for purposes necessary to process the donation.

We collect an Internet Protocol (IP) address from all visitors to our site.

An IP address is a number that is automatically assigned to your computer when you use the Internet. We use IP addresses to help diagnose problems with our server, administer our site, analyze trends, track users' movement, gather broad demographic information for aggregate use in order for us to improve the site, and deliver customized, personalized content.

Our website may use cookies to enhance your site experience.

Cookies are pieces of information that some websites transfer to the computer that is browsing that website and are used for record-keeping purposes at many websites. Use of cookies makes Web-surfing easier by performing certain functions such as saving your passwords, your personal preferences regarding your use of the particular website and to make sure you don't see the same ad repeatedly. Many consider the use of cookies to be an industry standard.

Your browser is probably set to accept cookies. However, if you would prefer not to receive cookies, you can alter the configuration of your browser to refuse cookies. If you choose to have your browser refuse cookies, it is possible that some areas of our site will not function properly when you view them.

How we use your contact information.

We use your contact information to send you updates about the National Scleroderma Foundation’s activities, research news, fundraising information, and notification of scleroderma-related events and information that may be of interest to you. At any time you may choose not to receive these mailings. Instructions for stopping email notices are included in each of our messages or you can call us at (800) 722-4673 and we will promptly honor your request. Registered users of our website and any one contacting the Foundation offline are able to opt-out of these mailings at the time they register, and can change that choice online at any time. They may also contact the Foundation directly to opt-out of any mailings.
Donations made online through our website using our Donation Form and other forms transmitted through our website are secure.

Donations to the National Scleroderma Foundation are transmitted using SSL (Secure Socket Layer) encryption. SSL is a proven coding system that lets your browser automatically encrypt, or scramble, data before you send it to us. We also protect account information by placing it on a secure portion of our website that is only accessible by certain qualified employees of the National Scleroderma Foundation. Unfortunately, however, no data transmission over the Internet is 100 percent secure. While we strive to protect your information, we cannot ensure or warrant the security of such information. 

Do not send personal information via email.

"Email" by its very nature is not secure. Please do not send us any personal information in your email that you would be uncomfortable sharing with others. Know that email can be intercepted and that a copy of your message may be stored on the computer you are using.

The electronic messages you receive from us may include “Tell-A-Friend” options. If a user elects to use our referral service for informing a friend about our site, we do not collect or save the friend's name or email address.

How to correct, update or verify your contact information.

To correct, update, or verify your contact information, or if you wish to stop receiving information from National Scleroderma Foundation, please call us at (800) 722-4673 or email us at We will promptly honor your request.

About the links and resources at our site.

Several sections of our site link to other places on the Internet. We believe the information or services at these sites are of significant interest to scleroderma patients, family members, caregivers, healthcare professionals and other supporters of our community. If you have concerns about their privacy policies or questions about their security, please contact those providers directly. We do not assume responsibility for the practices or content of any website which links to, or from, our site.

Regarding the Use of National Scleroderma Foundation’s Inspire Online Community

At our site you will find a link to our online social networking community through Inspire. In order to access all the services of our online community you will first need to complete a registration form including your name and email address. You may choose to provide us with additional personal information to enhance your experience in our community. 

Inspire offers interactive tools that allow users the ability to upload information for public consumption. Users can share experiences and photos, with others.  Please be advised that others can see discussion boards, groups and blogs.  Depending on the privacy settings you select, others can view your profile, photos, videos and postings, even when you are not logged in. Please exercise caution when posting information or providing information about yourself or others, especially contact information such as street address, phone numbers or email addresses. Inspire is intended for adults 18 and over.

You understand and agree that the National Scleroderma Foundation will intermittently review the postings and may edit, delete or remove (without notice) any content or postings at our discretion for any reason. Postings may not reflect National Scleroderma Foundation opinions, and are not to be construed as medical advice. The National Scleroderma Foundation may also at its sole discretion limit access to the Inspire community and/or terminate access of any users who do not abide by our policies.

We reserve the right, at our sole discretion, to change, modify, add, or delete portions of this policy at any time without further notice. If we do this, we will post the changes to this privacy policy at our Inspire website and will indicate the date these terms were last revised. Your continued use of our site after any such changes constitutes your acceptance of the new policy. If you do not agree to abide by these policies, do not use or access (or continue to use or access) the Inspire Community. It is your responsibility to regularly check to determine if there have been changes to these terms and to review such changes.

Regarding the Use of Our Site by Children Under 13

We encourage our young visitors to spend time online supervised by a parent or guardian.

Our site is intended for adults.

Because you can visit our site without disclosing any personal information, we do not know when a child is viewing our site. Like any web site, we offer email ability into our office and links to other sites. We encourage parents to speak with their children about the personal information they share online and privacy issues involving use of the Internet.

Protecting the privacy of the very young is especially important. For that reason, we adhere to the 1998 Children’s Online Privacy Protection Act (COPPA). (For more information, visit the Federal Trade Commission’s COPPA site at