CdLS Terms Of Use

Terms of Use (

This Web site with its home page in the domain “,” is a complimentary information and interactive community service offered by the Cornelia de Lange Syndrome Foundation, Inc. (“CdLS-USA”) at no charge to users of the World Wide Web, with the express condition that these users agree to be bound by the terms and conditions set forth in this User Agreement. The Cornelia de Lange Syndrome Foundation reserves the right to change these terms and conditions at any time, without notice to you, and you must consult the most recent version of this User Agreement (not an older cached version) each time you view the Web site. Use of this Web site constitutes your acceptance of all of the following terms and conditions, in their current form or as modified.

Description of Service

CdLS-USA currently provides users access to an extensive amount of resources, including, but not limited to, health and medical content, online tools, book/publication offerings and various communication tools (the “Service”). CdLS-USA assumes no responsibility or liability for the timeliness, deletion, misdelivery or failure to store any user communications or personalization data or settings. All such risks shall be borne by you.

User Submissions

By submitting communications or content to any part of this Site where such content would be viewable by the public (e.g. posting on a message board or other public communication), you agree that such submission is non-confidential for all purposes. Any submission to this Web site will be deemed and remain the property of CdLS-USA. You grant — or warrant that the owner of such content has expressly granted CdLS-USA a royalty-free, perpetual, irrevocable, world-wide, non-exclusive license to use, reproduce, create derivative works from, modify, publish, edit, translate, distribute, perform and display the communication or content in any media or medium, or any form, format, or forum now known or hereafter developed.

Modifications to the Service

CdLS-USA reserves the right at any time to modify or discontinue, temporarily or permanently, the Service (or any part thereof) with or without notice. You agree that CdLS-USA shall not be liable to you or to any third party for any modification, suspension, or discontinuance of the Service.


The material contained on the Web site (“Content”), including text, graphics, images, and information provided by users of the Web site (“Users”) in chat rooms, message boards, personal pages or otherwise, or obtained by the Cornelia de Lange Syndrome Foundation from other sources, is provided “as is” for general information only and for the purpose of educating consumers on Cornelia de Lange Syndrome and Cornelia de Lange Syndrome-related topics. The Content is not intended to be instructional for medical advice, diagnosis or treatment. The Content should not be considered complete, nor should it be relied on to suggest a course of treatment for a particular individual or as a substitute for consultations with qualified health professionals who are familiar with your individual medical needs. Should you have any health care related questions, please call or see your physician or other qualified health care provider promptly. Always consult with your physician or other qualified health care provider before embarking on a new treatment. You should never disregard medical advice or delay in seeking it because of something you have read on the Web site.

Disclaimer of Warranty

CdLS-USA makes no warranties of any kind regarding this Web site, including but not limited to any warranty of accuracy, completeness, currency, reliability, merchantability or fitness for a particular purpose, or any warranty that these pages, or the server that makes them available, are free of viruses or other harmful elements, and such warranties are expressly disclaimed.

Limitation of Liability

You agree that you will hold harmless CdLS-USA and its officers, directors, employees and volunteers from all claims arising out of or related to your access or use of, or your inability to access or use, this Web site or the information contained in this Web site or other Web sites to which it is linked. This includes, but is not limited to, information or materials viewed or downloaded from this Web site or another Web site to which it is linked that appear to you or are construed by you to be obscene, offensive, defamatory or that infringe upon your intellectual property rights. In no event will CdLS-USA or the contributors of information to this Web site be liable to you or anyone else for any decision made or action taken by you in reliance on such information or for any consequential, special or similar damages, even if advised of the possibility of such damages.


You acknowledge that the opinions and recommendations contained in this Web site are not necessarily those of the CdLS-USA or endorsed by CdLS-USA. CdLS-USA may provide links on the Web site to other Web sites which are not under the control of CdLS-USA. In general, any Web site that has an address (or URL) which does not contain “,” “,” “” or “,” is such a Web site. These links are provided for convenience of reference only and are not intended as an endorsement by CdLS-USA of the organization or individual operating the Web site or a warranty of any type regarding the Web site or the information on the Web site.

Usage of Content

Unless otherwise indicated, all information contained on this Web site, such as text, graphics, logos, button icons, images, audio clips is copyrighted by and proprietary to the Cornelia de Lange Syndrome Foundation, and may not be copied, reproduced, transmitted, displayed, performed, distributed, sublicensed, altered, stored for subsequent use or otherwise used in whole or in part in any manner without CdLS-USA’s prior written consent, except that the user may make such temporary copies in a single computer’s RAM and hard drive cache as are necessary to browse the Web site. The user may also make a single copy of the Content displayed on any page of the Web site to be used by the user for personal and noncommercial uses which do not harm the reputation of the CdLS-USA, provided that the user does not remove any trademarks, copyright and any other notice contained in such content.


Cornelia de Lange Syndrome Foundation and the Cornelia de Lange Syndrome Foundation Logo Design are registered service marks of the Cornelia de Lange Syndrome Foundation, Inc.


This Web site (excluding linked sites) is controlled by CdLS-USA which is headquartered in the State of Connecticut, United States of America. It can be accessed from all 50 states, as well as from other countries around the world. As each of these places has laws that may differ from those of Connecticut, by accessing this Web site both you and CdLS-USA agree that the statutes and laws of the State of Connecticut, without regard to conflicts of laws principles thereof, will apply to all matters arising from or relating to use of this Web site. You and the Cornelia de Lange Syndrome Foundation also agree and hereby submit to the exclusive personal jurisdiction and venue of the Superior Court of Hartford County, Connecticut and the United States District Court for the District of Connecticut with respect to such matters. CdLS-USA makes no representation that materials on the Web site are appropriate or available for use in other locations, and accessing them from territories where their contents are illegal is prohibited. Those who choose to access this Web site from other locations do so on their own initiative and are responsible for compliance with local laws.

Linking Information

Hypertext Linking. The CdLS-USA may grant the owner of an approved Web site permission to use a hyper-text link on his or her Web site, provided:

  • Any text-only link must clearly be marked “Cornelia de Lange Syndrome Foundation;”
  • The link must “point” to the URL, not to other pages within the Web site;
  • The appearance, position and other aspects of either the link or the host Web site may not be such as to damage or dilute the goodwill associated with CdLS-USA’s name and trademarks;
  • The appearance, position and other aspects of either the link or the host Web site may not create the false appearance that an entity other than CdLS-USA is associated with or sponsored by CdLS-USA;
  • The link, when activated by a user, must display this Web site full-screen and not with a “frame” on the linked Web site; and
  • CdLS-USA reserves the right to revoke its consent to the link at any time in its sole discretion by amending this User Agreement.

CdLS-USA is not responsible for the information or materials contained on the host Web site. Links to this Web site are provided for convenience of reference only and are not intended as an endorsement by CdLS-USA of the organization or individual operating the host Web site or a warranty of any type regarding the host Web site or the information on the host Web site.

Last Updated 09/01/10