PRIVACY POLICY

The National Scleroderma Foundation (“we”, “us” or “our”) is committed to safeguarding your privacy. This privacy policy outlines how and why we collect information about you and what your rights are. We may update this privacy policy from time to time, and we will make such updates available to you in advance of collecting additional information.

Online Privacy Policy Programming & Event 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
55 Ferncroft Road
Suite #315
Danvers, MA 01923
1-800-722-HOPE (4673)

Or email us at: info@scleroderma.org

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

The National Scleroderma Foundation’s Official Online Privacy Policy

The National Scleroderma Foundation uses its best efforts to respect and protect the privacy of our online visitors and donors. Your privacy is of the highest priority to the National Scleroderma Foundation. The Foundation, including affiliated Chapters and Support Groups, employees, or subcontractors, will not sell, give, or otherwise disseminate any information concerning you to any other organization, business, or individual outside the Foundation for any purpose.

What Information Do We Collect?
When you visit our website, you may provide us with two types of information: personal information you knowingly choose to disclose when you volunteer, make a financial donation or purchase materials, and information collected on an aggregate basis as you and others browse our website.

Email Information
If you choose to correspond with us through email, we may retain the content of your email messages together with your email address and any other corresponding email addresses. We store this information for the sole purpose of communicating through email and it will not be used for any other purpose without your consent.

Personal Information
If you make a financial donation, or request general information from the National Scleroderma Foundation, your contact information will be added to our database.

Cookies and Web Server Logs
Similar to other commercial websites, our website utilizes a standard technology called “cookies” (see explanation below, “What Are Cookies?”) and Web Server Logs (see explanation below, “What Are Web Server Logs?”) to collect information about how our website is used. Information gathered through cookies and Web server logs may include sign-on information, the date and time of visits, the pages viewed, time spent at our website, and the websites visited just before and just after our website.

How We Use Collected Information

Email Notices and e-Newsletter
Occasionally, we may also use the information we collect to notify you through email about important changes to our website, new content, and announcements we think you will find useful. You will be given the opportunity to notify us of your desire not to receive these notices by replying to these emails.

National Scleroderma Foundation Contact Information
The use of contact information on our website is strictly for persons interested in contacting Chapter and Support Group volunteers and/or staff for support and information purposes only. This contact information SHOULD NOT be taken from our website for solicitation or commercial uses.

We Care About Doing It Right
In addition to maintaining privacy and security controls over information you share with us, the National Scleroderma Foundation works to accurately process your contribution information. During business hours, staff is available to answer questions about your financial donation. To review and/or correct any personal information collected, please call 1-800-722-HOPE (4673) or email us.

The National Scleroderma Foundation employs error-checking procedures to make certain transactions are processed completely and accurately. As necessary, changes are made to improve our systems. Independent external and internal audits are conducted to ensure the privacy, security, and appropriate processing of your information on our site.

Your Consent
By using our website, you consent to our collection and use of your personal information as described in this Privacy Policy. If we change our privacy policies and procedures, we will post those changes on our website to keep you aware of what information we collect, how we use it and under what circumstances we may disclose it.

Thank you for visiting our site. Please email us should you have any questions about the operation of the site.

Frequently Asked Questions

Is Credit Card Information Secure?
When you make an online transaction, the credit card billing information, including the name on the credit card, billing address, and expiration date, is used to process the transaction. All this information is encrypted using SSL, industry standard secure technology. This encryption is designed to prevent theft or interception of the information.

Is My Personal Information Secure?
To prevent unauthorized access, maintain data accuracy, and ensure the appropriate use of information, we have established and maintain reasonable security procedures to protect the confidentiality, security, and integrity of the information we collect online.

Email that you may send to us may not be secure unless we advise you that security measures are in place prior to your transmitting the information. For that reason, we ask that you do not send confidential information such as Social Security or account numbers to us through email.

What Are Cookies?
Cookies are a feature of Web browser software that allows Web servers to recognize the computer used to access a website. Cookies are small pieces of data that are stored by a user’s Web browser on the user’s hard drive. Cookies can remember what information a user accesses on one Web page to simplify subsequent interactions with that website by the same user or to use the information to streamline the user’s transactions on related Web pages. Cookies should make your online experience easier and more personalized.

What Are Web Server Logs?
All user activity on our website is stored onto log files residing on our servers. We register Internet Protocol (IP) addresses to accumulate Web traffic reports, analyze trends, administer the site, track a user’s movement, and gather broad demographic information for aggregate use.

How Do We Use Information We Collect from Cookies and Web Server Logs?
The information in cookies allows registered users to automatically sign-on, allows us to trace the paths followed by users as they move from one page to another and makes restricted access for non-registered users to areas of our website possible. Web server logs allow us to count how many people visit our website and evaluate our website’s visitor capacity. Information that is collected from cookies and Web server logs is on an aggregate basis. None of this information is associated with you as an individual (except for cookies that help to automate a user’s sign-on process). We do not use these technologies to capture personal information about you.

Do We Disclose Information to Outside Parties?
We may provide aggregate information about our registered users, sales, website traffic patterns and related website information to our affiliates, partners or reputable third parties, but this information will not include personally identifying data.

What About Legally Compelled Disclosure of Information?
We may disclose information when legally compelled to do so.

What About Other Web Sites Linked to Our Web Site?
Please remember that when you use a link to go from our website to another website, our Privacy Policy is no longer in effect. Links to other websites are provided solely as pointers to information on topics that may be useful to the users of our website. Your browsing history and interaction on any other website, including websites, which have a link on our website, is subject to that website’s own rules and policies. Please read over those rules and policies before proceeding.

The National Scleroderma Foundation’s Programming & Event Privacy Policy

1. What We Collect
As part of your participation in our programs, we may ask you to share information about:

You. Such as your first name, last name, email address, and zip
Your Such as date, time, and location of the program you attended and whether it is in-person or virtual.

2. How We Use Your Information
We use your information primarily for internal purposes, including:

Impact we may use your information to report the actual impact and reach of our programs to current donors, grant applications, grant reporting and other funding (and potential funding) sources
Identifying Needs and Service Gaps We may use your information to identify trends and patterns allowing for the creation of new support groups or adjustment of existing ones to better cater to members’ needs. We may use your information to identify gaps in services and areas that require additional support or resources.
Resource Allocation. We may use your information to allocate resources effectively, ensuring that support groups and education programs are accessible to as many members as

We may also use your information to communicate with you about the program you participate in, such as when there are any changes affecting the program.

3. How We Share Your Information
Generally, we only share your information in a way that doesn’t identify you personally. However, there are specific situations where we might share your identifiable information:

Service Providers: We may share your information with third parties who help us with services like hosting or cloud They only use your information to do their job for us.
Legal Requirements: We share your information if required by law, such as in response to legal requests or subpoenas.
Compliance and Safety: We disclose information to help investigate or prevent illegal activities or fraud.

We do not sell your information.

4. Safeguarding Your Information
We use reasonable, standard administrative, technical, and physical safeguards to protect your personal information from loss, misuse, unauthorized access, disclosure, alteration, and destruction of your information. Only our authorized personnel with a need to know your information have access to the attendance records. In general, we will only retain your information for the time necessary to realize our legitimate business purposes and to comply with the law.

5. Your Choices and Rights
You have several choices regarding the use and disclosure of your information:

Information You Provide. With respect to the collection of your information, if you do not want your information collected, please do not submit it to us. If you have already submitted information and would like to review, correct or remove it from our records, please contact us.
*You are welcome to participate in our programs and services, regardless of whether or not you choose to provide us with your name, email address, and/or zip code.*
Marketing Messages. We may send you marketing communications, about our services that may interest You can opt out of our marketing communications at any time by selecting the “unsubscribe” link in the e-mail or contacting us. Please note that some non-marketing communications are not subject to general opt-out, such as communications relating to changes in a program you are enrolled in.

6. Questions
For any inquiries or concerns regarding this privacy policy, please contact Ashley Pruett, Vice President, Community Engagement, apruett@scleroderma.org or (978) 624-1242.

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Last Revised Oct. 18, 2024