Last Updated: 22 March 2024

The Ehlers-Danlos Society

Terms & Conditions


  • References to “The Society”, “us”, “we” or “our” refers to The Ehlers-Danlos Society 
  • “You”, “Your”, or “User” means the person visiting/using our website 
  • “Website” or “site” means  

Information About Us is a site operated by The Ehlers-Danlos Society.  

We are registered in the United States of America, with our headquarters at 447 Broadway, 2nd FL #670, New York, NY, 10013, USA. 

We are also registered in England and Wales under charity number 1180984, with our European office at Office 7, 35-37 Ludgate Hill, London, EC4M 7JN. 

 Accessing the Site  

  • If you are under 16, please check with your parent or guardian before using the website. 
  • Access to the site is permitted on a temporary basis, and we reserve the right to withdraw or amend the service we provide on the site without notice (see below). We will not be responsible if for any reason the site is unavailable at any time or for any period. 
  • From time to time, we may restrict access to some parts of the site, or the entire site. 
  • We do not guarantee that the functions or materials accessible from or contained in the site will be uninterrupted or error-free, that defects will be corrected, or that the site or the server that makes it available are free of viruses or faults. You are responsible for ensuring that your computer system meets all technical specifications necessary to use the site and is compatible with the site. 

Intellectual Property Rights  

  • We are the owner or the licensee of all intellectual property rights on the site, and in the material published on it. All such rights are reserved. 
  • The Society permits and encourages hyperlinks and text links to material on the site provided the user does so in a way that is fair, legal, and does not damage or take advantage of the reputation of The Society. 
  • You may print off and download extracts of any page(s) from the site for your personal reference and you may draw the attention of others to material posted on the site. 
  • You must not modify the paper or digital copies of any materials you have printed off or downloaded in any way, and you must not use any illustrations, photographs, video or audio sequences, or any graphics separately from any accompanying text. 
  • Our status (and that of any identified contributors) as the authors of material on the site must always be acknowledged. 
  • You must not use any part of the materials on the site for commercial purposes without obtaining written consent from us or our licensors. Please send any written requests to use content from the site using our general inquiry contact form or email 
  • If you print off, copy or download any part of the Site in breach of these terms and conditions, your right to use the Site will cease immediately and you must, at our option, return or destroy any copies of the materials you have made. 

Site Changes  

We aim to update the site regularly and may change the content at any time. However, any of the material on the site may be out of date at any given time, and we are under no obligation to update such material. 

Social Media Sites  

As part of the service, the website may also provide links to officially monitored and curated social media channels that also display our content. User’s use of these linked Society social media channels is also subject to these terms & conditions, as well as the terms & conditions of the social platform from which you access this content. 

The Society reserves all rights relating to the organization’s social media channels, including, but not limited to: 

  • Adding, removing, or modifying any content. 
  • Blocking harassing and disruptive users. 
  • Discontinuing any of our social media channels at any time. 

The Society does not warrant that the information on these social media channels is complete, reliable, useful, or otherwise accurate. Do not rely solely on the information presented on these social media platforms for medical advice. Further, The Society does not create nor control any opinions or statements expressed by others within its social media channels, including those that Follow, Like, re-Tweet, re-post, or otherwise share our content therein, nor does any similar action undertaken by The Society concerning another user’s content constitute an endorsement of that user. 

User Submissions & Content  

By submitting content to any part of the website or via the service where such content is viewable to the public, the user agrees that such submissions are non-confidential and non-proprietary for all purposes. By providing any such submission, any material will be deemed and remain the property of The Society. You represent and warrant that the owner of such content has expressly granted us a royalty-free, perpetual, irrevocable, worldwide non-exclusive license to use, reproduce, display, modify, publish, edit, translate, distribute, perform, and create derivative works from content in any media or medium, form, or forum known or hereafter developed. 

You represent and warrant that you own and control all rights to such submissions and have the right to grant the license to us and our licensees, successors, and assigns, and that all contributions do, and will, comply with these terms & conditions. You understand and acknowledge you are responsible for any contributions you submit and you, not The Society, have full responsibility for such content, including its legality, reliability, accuracy, and appropriateness.  

Copyright Infringement  

Content available on the website may include material provided by or received from third parties. The Society does not permit the use of content on its websites that infringes on the trademark or copyrights of others and will remove any such content if properly notified of such violation in accordance with the procedure set forth below. 

To notify us of alleged copyright or trademark infringement on any of our affiliated website, send a written communication for such claims at the following address: 


The Ehlers-Danlos Society – HQ 

447 Broadway 

2nd FL #670 

New York, NY, 

 10013, USA 




The Ehlers-Danlos Society – Europe Office 

Office 7  

35-37 Ludgate Hill 



Or email with the subject line “Potential copyright or trademark infringement” 

In your notice, please provide ALL of the following information: 

  • A physical or electronic signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed. 
  • Identification of the copyrighted work claimed to have been infringed, or if multiple copyrighted works at a single online site are covered by a single notification, a representative list of such works at that site. 
  • Identification of the material that is claimed to be infringing or to be the subject of infringing activity and that is to be removed or access to which is to be disabled, and information reasonably sufficient to permit the service provider to locate the material. 
  • Information reasonably sufficient to permit the service provider to contact the complaining party, such as an address, telephone number, and, if available, an electronic mail address at which the complaining party may be contacted. 
  • A statement that the complaining party has a good faith belief that use of the material in the manner complained of is not authorized by the copyright owner, its agent, or the law. 
  • A statement that the information in the notification is accurate, and under penalty of perjury, that the complaining party is authorized to act on behalf of the owner of an exclusive right that is allegedly infringed. 

Upon receiving the above information, we will promptly investigate and take appropriate action, then notify you of the undertaken action at the provided contact address.  


For information on how we use and collect user information when visiting the website or using the service, please see our Privacy Policy. By using the website, you consent to all actions taken by us with respect to your information in compliance with the Privacy Policy. 

Medical Disclaimer  

The user acknowledges that the information on the website is provided “as is” and for general information only. It is not intended as medical advice and should not be relied upon as a substitute for professional consultation with a qualified healthcare provider familiar with your individual medical needs. 

Limited Liability  

In no event will The Society, nor its officers, directors, employees, contractors/consultants, or volunteers be liable for damages (including any direct, indirect, special, incidental, consequential, or punitive damages), of any kind arising out of or related to your access of, use of, or inability to access or use this website or other websites to which it links (including third-party materials). This includes, but is not limited to, information or materials viewed or downloaded from this website or another linked website that appear to you or are construed by you to be obscene, offensive, defamatory, or infringing on your intellectual property rights. In no event will The Society or third parties that contribute information to the website be liable to you or anyone else for any decision or action taken by you in reliance of such information, even if we have been advised of or are aware of the possibility of these damages.  

The foregoing does not affect any liability that cannot be excluded or limited under applicable law.  


User agrees to indemnify, defend, and hold harmless The Society and its affiliates, licensors, and service providers, as well as their respective officers, directors, employees, contractors/consultants, agents, licensors, suppliers, successors, and assigns from and against any claims, judgments, damages, expenses, losses, or liabilities arising out of or relating to your violation of the terms & conditions or your use of the website, including, but not limited to, user submissions and any use of the website’s material and services outside what has been expressly authorized in these terms & conditions. 

Policy Review and Amendments 

This policy will be reviewed annually, by the end of the first quarter (Q1), to ensure that it continues to meet the needs of The Society and its community. We may revise these terms and conditions at any time and without prior notice by amending this page or posting a new set of terms and conditions on the Site. You are expected to check this page frequently to take notice of any changes we made. Your continued use of the Site after amendments or a new set of terms and conditions are posted constitutes your acceptance of these terms and conditions as modified. 

How to Contact Us  

If you have any questions about The Society’s Terms & Conditions, please do not hesitate to contact us.  

Email us at: 

Call us: +1 410-670-7577 or +44 203 887 6132 

Or write to us at: The Ehlers-Danlos Society Headquarters, 447 Broadway, 2nd FL #670, New York, NY, 10013, USA or The Ehlers-Danlos Society Europe Office, Office 7, 35-37 Ludgate Hill, London, EC4M 7JN, United Kingdom 

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