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Privacy Policy

The Cornelia de Lange Syndrome World Federation is a federation of worldwide national family support organizations which exists by the membership of it's members and affiliates 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

You decide if you want to share Individual, Identifiable information about yourself or your loved ones when, for example, when you make a donation, request information, share a story or an article or volunteer. This information may include your postal or e-mail address, your telephone number and your relationship to a person your loved ones.
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 with certain non-personally identifiable information (We try very hard to adhere to rules as prescribed in regulations like GDPR, and we use cookies and google analytics accordingly) when you visit our web pages; 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 but personal information will only be disclosed when you provide active consent and can only then 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. 

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 honoured. Only with a written approval of a member 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 David Axtell (Chair of the Federation)

Thank you.

Sobre o conteúdo do sítio web

Toda a informação contida neste WebSite é apenas para fins educativos. O local para obter aconselhamento médico específico, diagnósticos e tratamento é o seu médico. A utilização deste site é estritamente por sua conta e risco. Se encontrar algo que considere necessário corrigir ou esclarecer, por favor informe-nos em: 

Envie um e-mail: info@cdlsWorld.org