Privacy Policy

Online Privacy Policy

The Cornelia de Lange Syndrome Foundation is a family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives. The Foundation’s Web site is an important tool in carrying out its mission. We want you to be comfortable and confident when you use the Web site and, for that reason, we have adopted this privacy policy.


Individually Identifiable Information

We collect individually identifiable information about you when you choose to share information about yourself, for example, when you make a donation, request information or volunteer. This information may include your postal or email address, your telephone number and your relationship to a person with CdLS.

Individually identifiable information is used to provide you with information or to deliver the service you have requested. If you provide your postal address, telephone number or email address to the Foundation online, you may receive any of the following periodic contacts from us:

  • Mailings with information about CdLS and CdLS-related resource programs, services and events from the Foundation.
  • Telephone contact with information about orders you have placed online, as well as additional CdLS and CdLS-related information.
  • Telephone contact to invite you to join the Foundation, or to help the Foundation achieve its mission.
  • Email contact to respond to your questions, comments or suggestions.
  • Email contact to alert you to CdLS news updates and services of the Foundation.

We also may collect certain non-personally identifiable information when you visit some web pages or fill out forms such as the type of browser you are using (e.g., Netscape, Internet Explorer), the type of operating system you are using, (e.g., Windows ’95 or Mac OS) and the domain name of your Internet service provider (e.g., America Online, EarthLink).

Community Tools

Some portions of our site provide special services and offer interactive tools that allow users to upload information for public consumption. In some cases, users can share experiences, give advice and connect with others. Please remember personal information disclosed there will be seen by others. In addition, please exercise caution when posting information or providing information about yourself to others, especially contact information, such as street address, telephone number or email address.

Links to Other Sites

Our site provides links to other Web sites. The Foundation is not responsible for the information practices of linked sites. We encourage you to review the privacy policy of each site you visit.

Privacy Policy Changes

If we decide to change our privacy policy, we will post those changes here. We encourage you to review our policy from time to time.

Questions or Concerns

Whenever you have any questions or concerns, please contact us through any medium you prefer. Your complete satisfaction in dealing with the Foundation is important to us. If you have questions about the Foundation’s privacy practices described above, please send an email message to our info email address. Thank you.

Last updated 09/01/10