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Privacy Policy

 We value your privacy!  We will never give, lease, sell or otherwise disclose your personal information to a third party.  The Relapsing Polychondritis Global Awareness & Support Group are committed to protecting and respecting your privacy.   

We keep certain basic information when you visit our website and we recognise the importance of keeping that information secure.  This policy only applies to our site.  If you leave our site via a link or otherwise, you will be subject to the policy of that website provider.  We have no control over that policy or the terms of the website and you should check their policy before continuing to access their site. 

Information about you 

We may collect information about the people we support, our supporters, funders, volunteers and researchers.  This information could be personal, sensitive or be non-personal data.   We will collect personal information from you when you or your organisation enquire about our activities, request our support or subscribe to our services.   

We may ask for information about your health, your experience of Relapsing Polychondritis including diagnosis and symptoms etc 


We may collect information about you that you give to us directly for example when you: 


  • Correspond with us by phone, email, messenger or other platform 

  • Join our Global Patient Support Group via our Website 

  • Register for E-news 

  • Sign up,  take part in or attend one of our fundraising or support events 

  • Make a donation 

  • Tell us about your fundraising plans 

  • Contact us through social media including Facebook, Messenger and Twitter 

  • Choose to share your story with us. 

  • Volunteer for us. 

  • How we use your data 

Your personal information will mainly be used to: 

  • Provide you with the services, products or information you asked for 

  • Administer your donation or support your fundraising 

  • Keep you up to date with events, research opportunities and other general updates. 


Privacy of our Email Lists 

Individuals join our mailing lists and are added to our email database using the forms provided on the website, Mailchimp and Facebook or by signing up via paper forms at events.   

We may occasionally ask you to complete surveys that we use for research purposes but you are not obliged to respond to them. 

If you have provided us with your postal and/or email address, we may send you our newsletter and e-news which will include updates on our work, upcoming events, fundraising and research opportunities.   We do not ask for consent to write, email or call you about these things because each of these activities is fundamental to how we work and we have a legitimate special interest to contact you.  However, if you do not wish us to contact you, you have the right to opt-out at any time by contacting us directly or unsubscribing.   

We do not sell, rent, load, trade or lease the addresses on our lists to anyone. 

Unsubscribe Policy 

We strive to only send e-mail to those who want to receive it.  If you would not like to receive future e-mails from us, please use the ‘unsubscribe’ link at the bottom of our email communications. 

IP Addresses and Cookies 

We may collect information from your computer, including where available your IP address, operating system and browser type, for system administration.  This is statistical data about our users’ browsing actions and patters and does not in any way identify any individual. 

We may obtain information about your general internet usage by a cookie file which is stored on the hard drive of your computer.  Cookies contain information that is transferred to your computers hard drive which helps us to improve our site and to deliver a better and more personalised service.   


Such information allows us to estimate our audience size and usage pattern, to speed up your searches and to recognise you when you return to our site. 

You can refuse to accept cookies by activating the setting on your browser.  However if you select this setting you may be unable to access certain parts of our site. 



To protect your personal information, we take reasonable technical and organisational precautions  to make sure it is not inappropriately lost, misused, accessed, disclosed, altered or destroyed. 

Changes to the Privacy Policy 

We reserve the right to modify this privacy policy at any time.  Please review it periodically.  Changes and clarifications will take effect immediately upon their posting on the website.  

Questions and contact information 

If you would like to access, correct, amend or delete any personal information we have about you, please write to our Data Protection Officer at   

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