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1.0 What is this Privacy Policy for?

This privacy policy is for this website and served by The Ehlers-Danlos Support UK and governs the privacy of its users who choose to use it.

The policy sets out the different areas where user privacy is concerned and outlines the obligations and requirements of the users, the website and website owners. Furthermore the way this website processes, stores and protects user data and information is also detailed within this policy.

2.0 The Website

The Ehlers-Danlos Support UK is committed to ensuring that all personal information collected and processed is appropriate for the stated purpose(s) and shall not constitute an invasion of your privacy. This website and its owners take a proactive approach to user privacy and ensure the necessary steps are taken to protect the privacy of its users throughout their visiting experience. This website complies to all UK national laws and requirements for user privacy.

3.0 How we use your personal data

Users contacting this website and/or its owners do so at their own discretion and provide any such personal details requested at their own risk. Your personal information is kept private and stored securely in line with the Data Protection Act 2018.  Every effort has been made to ensure a safe and secure form to email submission process but we advise users using such form to email processes that they do so at their own risk.

The Ehlers-Danlos Support UK will use the personal data collected from you for the following purposes:

To respond to an enquiry submitted through the website and to assist us with funding applications through the use of aggregated, anonymised data. When submitting an enquiry through the website you have the option to select the Hypermobility Syndromes Association. When doing so your data will be sent directly to them and will not be stored by The Ehlers-Danlos Support UK. When your data is sent the Hypermobility Syndromes Association it will be processed in accordance with their privacy policy. Their privacy policy can be viewed here.

3.1 Storage and processing of your personal data

The Ehlers-Danlos Support UK transfers some data outside of the European Union (EU) through its use of Xero as its accounting software, which has servers located outside of the EU. This includes (at most) name, address and email address The transfer of personal data outside the EU is controlled by The Ehlers-Danlos Support UK’s policy on Personal Data Transfer Outside of the EU.

3.2 Your rights

Your rights in respect of your personal data stored and processed by The Ehlers-Danlos Support UK include but are not limited to:

  • The right to access personal information we hold about you;
  • The right to withdraw consent;
  • The right to amend personal data we hold about you;
  • The right to request that your personal data be permanently deleted;
  • The right to strict processing; and
  • The right to raise an official complaint with the relevant authority;

Please email to request access to the information we hold about you or for any enquiry about your personal data.

3.3 Automated data processing

The Ehlers-Danlos Support UK does not undertake automated processing (e.g. profiling) on any personal data.

3.4  Third parties

We may share your personal data with third party service providers who are contracted by us and we shall ensure that they will hold your personal data securely and shall use it only in order to fulfill the service for which they are contracted. When there is no longer a service need, or the contract comes to an end, the third party will dispose of all personal data using procedures approved by us. We will never sell your personal data.

4.0 Use of cookies

This website uses cookies to better the users’ experience while visiting the website. Cookies are small files saved to the user’s computer’s hard drive that track, save and store information about the user’s interactions and usage of the website. This allows the website, through its server, to provide the users with a tailored experience within this website. When first visiting the website you will be asked to specify which types of Cookies you would are happy to be stored on your device. You preference is saved for a maximum of 12 months. Users are all advised that if they wish to deny the use and saving of cookies from this website on to their computer’s hard drive they should take necessary steps within their web browser’s security settings to block all cookies from this website and its external serving vendors.

If approved by the user this website uses tracking software to monitor its visitors to better understand how they use it. This software is provided by Google Analytics which uses cookies to track visitor usage. The software will save a cookie to your computer’s hard drive in order to track and monitor your engagement and usage of the website, but will not store, save or collect personal information. You can read Google’s privacy policy here for further information

You can update your Cookie preference for this website at any tine by click the button below:

Update cookie preference

5.0 External links

Although this website only looks to include quality, safe and relevant external links, users are advised to adopt a policy of caution before clicking any external web links mentioned throughout this website. (External links are clickable text / banner / image links to other websites.)

The owners of this website cannot guarantee or verify the contents of any externally linked website despite their best efforts. Users should therefore note they click on external links at their own risk and this website and its owners cannot be held liable for any damages or implications caused by visiting any external links mentioned.

6.0 Social media platforms

Communication, engagement and actions taken through external social media platforms that this website and its owners participate on are custom to the terms and conditions as well as the privacy policies held with each social media platform respectively.

Users are advised to use social media platforms wisely and communicate / engage upon them with due care and caution in regard to their own privacy and personal details. This website nor its owners will never ask for personal or sensitive information through social media platforms and encourage users wishing to discuss sensitive details to contact them through primary communication channels such as by telephone or email.

This website may use social sharing buttons which help share web content directly from web pages to the social media platform in question. Users are advised before using such social sharing buttons that they do so at their own discretion and note that the social media platform may track and save your request to share a web page respectively through your social media platform account.

7.0 Shortened links in social media

This website and its owners through their social media platform accounts may share web links to relevant web pages. By default some social media platforms shorten lengthy urls [web addresses] (this is an example:

Users are advised to use caution and good judgement before clicking any shortened urls published on social media platforms by this website and its owners. Despite the best efforts to ensure only genuine urls are published many social media platforms are prone to spam and hacking and therefore this website and its owners cannot be held liable for any damages or implications caused by visiting any shortened links.

8.0 Resources and further information

v.1.0 Apr 2021: The Ehlers-Danlos Support UK, Devonshire House, Manor Way, Borehamwood, WD6 1QQ