Effective Date: May 5, 2018

At the Williams Syndrome Association (WSA), your privacy is our priority. We are committed to protecting your privacy at all times, in all situations. The information we collect about you when you become a member, donor or constituent, is used to process your membership, order, donation, or request for information and referral, for our proper administration of WSA and to provide you member benefits.


When you become a member of the WSA, we ask you to fill out a form that requests your name, address and e-mail address, and telephone, as well as some demographic information such as gender, age, and information about your family.

Your name and address information is used to process your membership, donation, order, request for information and referral as well as our proper administration of WSA. WSA does not sell, give, rent or trade your information for any reasons other than those specified in this Notice.


When you visit our Web site (www.williams-syndrome.org) we automatically log your IP address, your browser type and your access times. We utilize this information to conduct site performance evaluations, to see where visitors are coming from and to keep track of click stream data (the screens our users visit on our site). This data helps us to determine what content our members find most appealing so that we can maximize your usage of the site.

Cookies are pieces of information that your browser stores on your computer's hard drive which, for some sites, identifies you when you enter or use certain features. The ability to select or download information on our site is not cookie-driven. 

Do not track requests are sent from your web browser to the website indicating the user does not want to be tracked by websites. Currently, many websites, including this website, do not honor these requests.


All employees of the WSA take your personal information very seriously. All employees must learn and obey our security policies. Access to members’ personal information is limited to key management personnel and our member and donor services departments. The information is ID and password protected. Our Web security is reviewed regularly.


The WSA utilizes the services of intermediaries - United Parcel Service (UPS), FedEx, and various direct mail firms to process and/or send out to our member renewals, solicitations, newsletters and orders. To our knowledge, these intermediaries do not store, retain or use the information in any way. WSA also sometimes uses third parties to provide the services offered through the website. For example, we may have an IT company assist us with the design and administration of the website or use a consultant to determine what products or services our members and donors may be interested in receiving.


The WSA’s Web site (www.williams-syndrome.org) contains links to other Web sites. Please note that when you click on one of these links, you may be leaving the WSA's site and entering another Web site. These sites may independently collect or request information about you and we encourage you to read the privacy statements of these linked sites as their privacy policy may differ from ours. Please visit our disclaimer for additional information.


From time to time we may send out email messages soliciting your support, prompting a call to action, or alerting you of what’s new at the WSA. In addition, you may receive communications from us if you have contacted us for a particular reason, and/or to receive the information or service you have requested.


Some jurisdictions (state, federal, national and international), such as California and the European Economic Area (under the General Data Protection Regulation (GDPR)), provide individuals with certain rights regarding their personal information. To exercise any rights your jurisdiction may provide, contact us at WSA toll-free at 1-800-806-1871, which is also listed at the bottom of this Notice. As examples, California provides individuals with the right to view and access their personal information and GDPR provides European residents with the following individual rights.

  • Being informed about your personal information. You may have the right to understand what personal information we collect about you as well as how we use and share that personal information.
  • Viewing and obtaining a copy of the personal information we maintain about you.
  • Amending or revising the personal information we maintain about you.
  • Having personal information we keep about you erased (also known as the right to be forgotten).
  • Objecting to the use of your personal information for direct marketing.
  • Restricting our use of the personal information we maintain about you.
  • Transferring the personal information we maintain about you to another entity.
  • Objecting to our use of the personal information we maintain about you.
  • Objecting to automated decision making or profiling. We do not make automated decisions about you and do not profile individuals who visit our Site.
  • Filing a complaint with us or the appropriate governmental entity.

We may require that you verify your identity before exercising your individual rights.


Our Site is not directed to children under age 13 and we do not knowingly collect information from children. If we obtain actual knowledge that we have collected information from a child under age 13, we will promptly destroy that information, unless we are legally obligated to retain the information. If you believe we have mistakenly or unintentionally collected information from a child under the age of majority,
please contact us at WSA toll-free at 1-800-806-1871.


By becoming a member, donor, or constituent of the WSA, and/or by using our Web site, you consent to the collection and use of the information you provide to us as described above. If we make any material changes in our privacy practices or in how we use your personally identifiable information, we will post a prominent notice in the WSA’s electronic newsletter and on our Web site prior to implementation of the change.

If you prefer not to receive member benefit offers or requests for donations, 
please contact the WSA toll-free at 1-800-806-1871, or e-mail us at info@williams-syndrome.org;
or write us at 560 Kirts Blvd, Ste 116, Troy, Michigan 48084.