Privacy Policy
Last modified by Gerritjan Koekkoek on 2009/07/16 19:54
The Cornelia de Lange Syndrome World Federation is a federation of worldwide national family support organizations 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 Federation'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 Federation online, you may receive any of the following periodic contacts from us:
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 Federation 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 Federation is important to us. If you have questions about the Cornelia de Lange Syndrome Federation’s privacy practices described above, please send an e-mail message to Ulla Mugler (Chair of the Federation) Thank you.
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 Federation 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 Federation.
- Mailings that invite you to join the one of the Federation s National support groups.
- Telephone contact with information about inquiries you have placed online, as well as additional CdLS and CdLS-related information.
- 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 Federation or it's members.
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 Federation 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 Federation is important to us. If you have questions about the Cornelia de Lange Syndrome Federation’s privacy practices described above, please send an e-mail message to Ulla Mugler (Chair of the Federation) Thank you.
