Terms, Conditions and Privacy Policy

IMPORTANT: PLEASE READ THESE TERMS AND CONDITIONS OF USE CAREFULLY BEFORE USING THE SATB2GENE.org WEBSITE OR ANY VIDEO, AUDIO, APPLICATIONS, FEATURES OR FUNCTIONALITY AVAILABLE ON OR THROUGH THE WEBSITE (collectively, the “Site”).

Last Edited: December 1, 2020

Please review this Privacy Policy carefully to understand how we collect information, how we use the information, with whom we share it, and the choices available regarding our use of the information. If you do not agree with our policies and practices, you may choose not to use our Site or our Services. By accessing and using the Site or our Services, you accept and agree to this Privacy Policy.

The trademarks, logos, and service marks displayed on this website, including the SATB2 Gene Foundation logo, are the property of SATB2 Gene Foundation, and are protected. Their uses are restricted by the SATB2 Gene Foundation and may not be used for personal financial gain. Use of the Marks is prohibited without the express written consent of the SATB2 Gene Foundation. Please contact the Foundation before use of the logo or mark in any manner.

This privacy notice discloses the privacy practices for https://satb2gene.org/. This privacy notice applies solely to information collected by this website. It will notify you of the following:

  1. What personally identifiable information is collected from you through the website, how it is used and with whom it may be shared.
  2. What choices are available to you regarding the use of your data.
  3. The security procedures in place to protect the misuse of your information.
  4. How you can correct any inaccuracies in the information.

Information Collection, Use, and Sharing

We are the sole owners of the information collected on this site. We only have access to/collect information that you voluntarily give us via email or other direct contact from you. We will not sell or rent this information to anyone.

We will use your information to respond to you, regarding the reason you contacted us. We will not share your information with any third party outside of our organization, other than as necessary to fulfill your request.

Unless you ask us not to, we may contact you via email in the future to tell you about news, events, other updates, or changes to this privacy policy.

The SATB2 Gene Foundation Contact Registry is used to inform parents/guardians of individuals with SATB2-associated syndrome about:

  • SATB2-associated syndrome resources added to the closed resource portal
  • opportunities to participate in research
  • opportunities to contribute data
  • discoveries about SATB2-associated syndrome that may impact care decisions
  • Newsletters
  • Conference announcements
  • Other special announcements, such as fundraising initiatives and volunteer opportunities

The contact registry database will not be shared with external organizations without your consent. Registrants will be provided with contact information about relevant research and survey efforts. These initiatives will include our own internal projects as well as the projects of outside researchers. We may use aggregate data from the contact registry to publish statistics about the incidence of SATB2-associated syndrome.  For example, we may use contact registry data to say how many people have SATB2-associated syndrome, their age ranges, and how they are distributed geographically. You may opt-out of the contact registry at any time by contacting the SATB2 Gene Foundation.

Children’s Online Privacy Protection Act (COPPA)

When it comes to the collection of information from children under the age of 13 years old, the Children’s Online Privacy Protection Act (COPPA) puts parents in control. The United States Federal Trade Commission enforces COPPA, which spells out what operators of websites and online services must do to protect children’s privacy and safety online. We comply with all applicable COPPA requirements and do not specifically market our Services to children under the age of 13 years old.

Your Access to and Control Over Information

You may opt out of any future contacts from us at any time. You can do the following at any time by contacting us via the email address or phone number given on our website:

  • See what data we have about you, if any.
  • Change/correct any data we have about you.
  • Have us delete any data we have about you.
  • Express any concern you have about our use of your data.

Security

We take precautions to protect your information. When you submit sensitive information via the website, your information is protected both online and offline.

Wherever we collect sensitive information, that information is encrypted and transmitted to us in a secure way. You can verify this by looking for a lock icon in the address bar and looking for “https” at the beginning of the address of the Web page.

While we use encryption to protect sensitive information transmitted online, we also protect your information offline. Only employees who need the information to perform a specific job  are granted access to personally identifiable information. The computers/servers in which we store personally identifiable information are kept in a secure environment.

If you feel that we are not abiding by this privacy policy, you should contact us immediately via telephone at +1 678 832 9133, via email, or our contact page.

Donations/Purchases

We request information from you on our donation form. To donate to us, you must provide contact information (like name and address) and financial information (like credit card number, expiration date). This information is used for billing purposes and to process your donation. If we have trouble processing an order, we’ll use this information to contact you. Your credit card information is never stored on our servers, and is securely processed directly through our encrypted credit card processing service, Stripe.

Cookies

We use “cookies” on this site. A cookie is a piece of data stored on a site visitor’s hard drive to help us improve your access to our site and identify repeat visitors to our site. For instance, when we use a cookie to identify you, you would not have to log in a password more than once, thereby saving time while on our site. Cookies can also enable us to track and target the interests of our users to enhance the experience on our site. Usage of a cookie is in no way linked to any personally identifiable information on our site.

If you share information collected on your site with other parties, insert one or more of these paragraphs in your privacy notice: 

Sharing

We share aggregated demographic information with our partners. This is not linked to any personal information that can identify any individual person.

And/or:

We use a credit card processing company (Stripe) to bill users for donations. These companies do not retain, share, store or use personally identifiable information for any secondary purposes beyond processing your order.

And/or:

We partner with another party to provide specific services. When the user signs up for these services, we will share names, or other contact information that is necessary for the third party to provide these services. These parties are not allowed to use personally identifiable information except for the purpose of providing these services.

Links

This website contains links to other sites. Please be aware that we are not responsible for the content or privacy practices of such other sites. We encourage our users to be aware when they leave our site and to read the privacy statements of any other site that collects personally identifiable information.

Surveys & Contests 

From time-to-time our site requests information via surveys or contests. Participation in these surveys or contests is completely voluntary and you may choose whether or not to participate and therefore disclose this information. Information requested may include contact information (such as name and address), and demographic information (such as zip code, age level). Contact information will be used to notify the winners and award prizes. Survey information will be used for purposes of monitoring or improving the use and satisfaction of this site.

Changes To Our Privacy Policy

At our sole discretion, we may make changes to this Privacy Policy at any time. When changes are made, we will post an updated Privacy Policy on our Site. The changes will apply to all information we have about you. All changes are effective immediately upon posting; the date the Privacy Policy was last revised is identified at the top of the page. If you access and use our Site or Services after the date on which the Privacy Policy has changes, SATB2 Gene Foundation will treat your use as acceptance of the updated Privacy Notice. You are expected to check this page from time to time so you are aware of any changes, as they are binding on you.

Questions and Comments

SATB2 Gene Foundation commits to resolve questions and comments about your privacy and our collection and use of your information. Individuals with inquiries or comments should contact SATB2 Gene Foundation at: allison@satb2gene.org.