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Privacy Policy

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:

  • 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 or Facebook contact to respond to your questions, comments or suggestions.
  • E-mail or Facebook contact to alert you to CdLS news updates and services of the Federation or it's members.

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.

Your visits to our site

We track which information is most visited, modified. we track how our users find our website and where they leave it. This is done wit certain non-personally identifiable information (cookies) 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 blogs and personal pages are shared with other approved people 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. 


We work together with Facebook in a restricted way. When you register on our website via Facebook we will ask you permission on Facebook with a message on which information on Facebook we will use. This will primarily be: Your Name, Your email address, Your Facebook foto.

In no way will we override your own privacy settings you have set in Facebook. So information like photo-albums, movies or your messages you have shared with only your best friends on Facebook will not be disclosed via CdLS World if the CdLS World user is not among your Facebook best friends. 

The same accounts for publications on CdLS World you share via Facebook. A link to the page you share will be put on Facebook. Facebook Best friends who are not registered on CdLS World will not be able to see the page if it is in a private CdLS World space.

Sharing of information on CdLS World via community tools

(Email, Twitter, Instagram, Whatsapp, Facebook, Google + and many/any others)

If you agree to this policy you are allowed to share any information found on this site you have access to (text, photo's, movies) via a reference link (URL). You are allowed to copy, print information for personal use only. You are not allowed to share these copies or prints via the community tools or via distribution! You can write a request to the members of the federation (or the federation) to ask for approval. Only with a precise description of which information you want to use can such a request be honored.Only with a written approval of amember of the federation you can share copies or prints.

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, Complaints or Concerns

Whenever you have any questions, complaints 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 Gerritjan Koekkoek (Chair of the Federation)

Thank you.

About the website contents

All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

Send a email: info@cdlsWorld.org