Privacy Policy

Approved by the TS Alliance Executive Committee: May 4, 2018

The Tuberous Sclerosis Alliance (“TS Alliance,” or “we”, “us”, “our”) respects your privacy.  We protect your personal information and adhere to the highest standards in gathering, using, and safeguarding constituent information, including all personal donor and gift information.  The TS Alliance does not rent, sell or trade our mailing lists.  Information you provide – such as name, physical address, phone number or email address – will be used only to deliver such services and to keep you informed and up to date on TS Alliance activities, including programs, services, special events, funding needs, opportunities to volunteer or legislative alerts.  The TS Alliance does not knowingly solicit information or contributions from minors under the age of 18 without the consent of a parent or guardian, and we request that anyone with knowledge or information or contributions from a minor immediately advise us.

If at any time you wish to receive less information via mail or online, wish to be removed from any or all of our communications, or have any concerns with respect to this policy or any information provided or obtained by the TS Alliance, simply contact us by phone at 800-225-6872 or via email at info@tsalliance.org.  We will gladly accommodate your request.

We periodically update this Privacy Policy.  When we so, we will also revise the “last updated” date at the beginning of the Privacy Policy.  We encourage you to review this Privacy Policy periodically.

1. Information We Collect

When you visit the Site, we may collect and use personally identifiable information about you, as well as other usage information.  We collect information in the following ways:

  • Information You Give Us Directly by filling in forms on our Site. This may include name, postal address, email address, telephone number, or similar information that can be used to identify you and is defined as personal or personally identifiable information under applicable law.
  • Information We Get from Your Visit to the Site and the resources that you access—including, but not limited to, traffic data, location data, weblogs and other communication data, including your IP address, browser type, the date and time you accessed or left the Websites, and which pages you viewed. Some parts of our Websites use cookies, tags and scripts, or other technologies to collect this information about your general internet usage.  See the section below called “Use of Tracking Technologies” to learn more.
  • Information Provided to Us When You Communicate with Us for any reason, including information you provide in emails you send us, responses to surveys, search queries, and details of any donation.
  • Payment Information. We may collect and process payment information from you when you donate online, including credit card numbers and billing information, using third-party PCI-compliant service providers. Except for this, we do not collect any financial information from you.

2. How We Use the Information We Collect

We use the information we collect from you primarily to enable us to provide our services in the best possible manner.  We only use this information in compliance with this Privacy Policy.  We will never sell your personal information.

2.1 Use of Personal Information

In addition to the uses identified elsewhere in this Privacy Policy, we may use your personal information to:

  • respond to any requests you may have;
  • send you communications and updates relating to TS Alliance;
  • notify you about changes to the Site;
  • improve your browsing experience by personalizing the Site; or
  • provide you with information, products, or services that you request from us or which we think may be of interest to you.

We may also use your personal information for any other purpose with your consent.

2.2  Use of Tracking Technologies

We may use various technologies to collect and store information when you visit the Websites or use the Software.

Cookies

A cookie is a small file placed on your computer or device when you visit a website.  We use cookies for various functions, including to understand whether a visitor has previously visited a particular website or to make the log-in experience easier.  Cookies are uniquely assigned to you and may store user preferences and other information.  You may refuse to accept cookies by activating the appropriate setting on your browser.  However, if you select this setting you may then be unable to access certain parts of the Site.

Tags and Scripts

Certain pages of the Site and our emails may contain small electronic files known as web beacons (also referred to as clear gifs, pixel tags, and single-pixel gifs) that permit us, for example, to count users who have visited these pages or opened the email and provide other related website statistics (for example, recording the popularity of certain website content and verifying system and server integrity).  This assists in informing us which systems are operating effectively and helps us understand how well a website is performing for visitors.

2.3  Use of Credit Card Information

If you give us credit card information, we use it solely to collect donations from you.  We use a third-party service provider to manage credit card processing.  This service provider is not permitted to store, retain, or use information you provide except for the sole purpose of credit card processing on our behalf.

3. Information We Share

Except as described below, your name or other information will not be shared with third parties unless you have specifically requested or agreed for us to do so, such as when you choose to participate in our TSC Connect, Step Forward to Cure TSC recognition programs, donor match programs or research programs, when disclosure may be required by law.

We utilize other trusted companies and people to assist in the maintenance or administration of the organization’s records.  In all cases where we share your information with such service providers, we require that they adhere to our Privacy Policy and take appropriate security measures to ensure the confidentiality of any personal information they handle.

We may also disclose your personal information, if we have a good faith belief that disclosure is necessary to:

  • comply with any court order, law, or legal process, including to respond to any government or regulatory requirement; or
  • protect the rights, property, or safety of TS Alliance, our customers, or others. This includes exchanges of information with other companies and organizations for the purposes of fraud protection and credit risk reduction.

4. Choice

Our goal is to be clear about what information we collect, so you can make meaningful choices about how it is used.  Therefore, upon request, we will provide you with information about whether we hold any of your personal information. If you provide us with your personal information, you may:

  • review the information you have supplied to us;
  • request we correct any errors, outdated information, or omissions in user information that you have supplied to us;
  • request your information not be used to contact you;
  • request your information be removed from any solicitation list we use; or
  • request your information be deleted from our records.

To exercise any of these rights, please contact Justin Martucci, Database Project Manager, at jmartucci@tsalliance.org.  We will respond to your request to change, correct, or delete your information within a reasonable time and notify you of the action we have taken.

If your information has been shared with a third party, as described elsewhere in this Privacy Policy, then that third party has received its own copy of your data.  If you have been contacted by one of these third parties and wish to correct or delete your information, please contact them directly.

5. Information Security

We have implemented a variety of measures designed to secure your personal information from accidental loss and from unauthorized access, use, alteration, and disclosure.

Unfortunately, the transmission of information via the internet is not completely secure.  Although we do our best to protect your personal information, we cannot guarantee the security of your personal information transmitted to us.  Any transmission of personal information is at your own risk.  We are not responsible for any circumvention of any privacy settings or security measures contained on the Websites or Software.

6. Third-Party Content

Some of the content or applications on the Site are served by third parties, including content providers and application providers.  We are not responsible for the privacy practices used by other websites that may be accessible or linked to by our Site.  By accessing other third-party websites or applications through the Site, you are consenting to the terms and privacy policies of those websites.  It is possible that other parties may collect personally identifiable information or use cookies to collect information about your online activities over time and across different websites.

7. Information About Children

The Websites are not intended for or targeted at children under thirteen (13), and we do not knowingly or intentionally collect information about children under thirteen.  If you believe we have collected information about a child under 13, please contact Justin Martucci, Database Project Manager, at jmartucci@tsalliance.org, so we may delete the information.

8. General Data Protection Regulation

Personal information regarding individuals who reside in a member state of the European Economic Area and Switzerland is controlled by TS Alliance.  We abide by the General Data Protection Regulation (GDPR).  The GDPR provides a framework for organizations to ensure protection of the personal information of European citizens and gives European citizens certain rights, including:

  • the right to be informed;
  • the right of access;
  • the right to rectification;
  • the right to erasure;
  • the right to restrict processing;
  • the right to data portability;
  • the right to object; and
  • rights in relation to automated decision making and profiling.

For a full list of rights, please visit www.eugdpr.org.

9. Contact Us

If you have any questions or comments about this Privacy Policy, please contact Jaye Isham, Vice President, Communications Strategy, at jisham@tsalliance.org.