The Cornelia de Lange Syndrome Foundation is a family support organization which 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 lifetime. The Foundation's website is an important tool in carrying out our mission. We want you to be comfortable and confident when you use the website 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 e-mail 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 e-mail address to the Cornelia de Lange Syndrome Foundation
online, you may receive any of the following periodic contacts from us:
- Mailings with information about additional CdLS and CdLS-related resource programs, services and events from the Cornelia de Lange Syndrome Foundation.
- Mailings that invite you to join 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.
- E-mail contact to respond to your questions, comments or suggestions.
- E-mail contact to alert you to CdLS news updates and services of the Foundation.
At certain parts of some of our site, only those who provide us with the
requested personally identifiable information will be able to use tools or
otherwise participate in the site's activities and offerings.
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
that chat rooms, message boards and personal pages are public forums and 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 where you can find more CdLS-related
information. Please note that 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 Cornelia
de Lange Syndrome Foundation is important to us. If you have questions about
the Cornelia de Lange Syndrome Foundation’s privacy practices described
above, please send an e-mail message to info@cdlsusa.org.
Thank you.
© CdLS-USA Foundation, 2003.
info@cdlsusa.org
Last updated 5/9/03.