Terms of Use – www.ptlsfoundation.org

This Web Site with its home page in the domain “PTLS Foundation.org” is complimentary information and interactive community service offered by PTLS Foundation, Inc. at no charge to users of the worldwide web, with the express condition that these users agree to be bound by the terms and conditions set forth in this User Agreement. PTLS 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

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

Privacy Policy

PTLS Foundation is committed to protecting your privacy. To better protect your privacy, we provide this notice explaining our online information practices and choices you can make about the way your information is collected and used. We define personal information to include: name, email, address, phone number, survey responses, registry information and content of your correspondence with us.

When you contact us, your email address and other information included in your email may be forwarded by us to the appropriate person(s) within PTLS Foundation for a response. A copy of your correspondence may be retained at the PTLS Foundation office and also by the responding individual. PTLS Foundation has established and maintains a list of our members including affected individuals, families, friends, relatives, physicians, scientists, contributors and others interested in PTLS to allow us to communicate with you. Our list will not be sold, rented or given to any third party for commercial use, nor do we currently expect to release these lists to any third party for any reason. However, if PTLS Foundation sees a need or a possible benefit to you of making your personal information available to a third party, we will not do so without first identifying the recipient and providing a full explanation to you. Information determined to be confidential can only be released by written or verbal permission by the person or organization identified. Verbal permission can only be given for a specific release. Any general release must be in writing.

This Web Site provides links to other sites that may be of interest. PTLS Foundation is not responsible for the privacy practices or content of other such web sites.

Usage of Content

Unless otherwise indicated, all information contained on this Web Site (“Content”), such as text, graphics, logos, button icons, images, audio clips is copyrighted by and proprietary to PTLS Foundation, and may not be copied, reproduced, transmitted, displayed, performed, distributed, sub-licensed, altered, stored for subsequent use or otherwise used in whole or in part in any manner without PTLS Foundation prior written consent, except that the user may make such temporary copies in a single computer’s memory and/or 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 PTLS Foundation, provided that the user does not remove any trademarks, copyright and any other notice contained in such Content.

User Submissions

By submitting communications or content to any part of this Web 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 PTLS Foundation. You grant or warrant that the owner of such content has expressly granted PTLS Foundation 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

PTLS Foundation 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 PTLS Foundation 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, including text, graphics, images, and information provided by users of the Web Site (“Users”) or obtained by PTLS Foundation from other sources, is provided “as is” for general information only and for the purpose of educating persons interested in Potocki-Lupski Syndrome (PTLS) and PTLS-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

PTLS Foundation 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 PTLS Foundation 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, and defamatory or that infringe upon your intellectual property rights. In no event will PTLS Foundation 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 PTLS Foundation or endorsed by PTLS Foundation. PTLS Foundation may provide links on the Web Site to other web sites which are not under the control of PTLS Foundation. In general, any web site that has an address (URL) which does not contain “PTLS Foundation.org” is such a web site. These links are provided for convenience of reference only and are not intended as an endorsement by PTLS Foundation 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.


This Web Site (excluding linked sites) is controlled by PTLS Foundation which is incorporated in the State of Texas, 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 Texas, by accessing this Web Site both you and PTLS Foundation agree that the statutes and laws of the State of Texas, 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 PTLS Foundation also agree and hereby submit to the exclusive personal jurisdiction and venue of the Texas Organizational Business Code and the United States District Court for the State of Texas with respect to such matters. PTLS Foundation 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. PTLS Foundation 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 “PTLS Foundation “;
  • The link must point to the URL www.PTLSFoundation.org, 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 PTLS Foundation 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 PTLS Foundation is associated with or sponsored by PTLS Foundation;
  • 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
  • PTLS Foundation reserves the right to revoke its consent to the link at any time in its sole discretion by amending this User Agreement.

PTLS Foundation 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 PTLS Foundation 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.


©2013 PTLS Foundation, Inc. All rights reserved

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