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Privacy Policy


 At Fibromyalgia Action UK, your privacy and preferences matter. We promise to: 

  • Respect your personal details that you share with us, or that we obtain from third parties, and to keep them safe and secure; 
  • Never sell or exchange your information with another organisation for their own use, without your permission; 
  • Respond promptly to any request you make to change your details, or for us to stop using your information; 
  • Be clear when we collect your details and not to do anything you would not reasonably expect.   

By allowing us to use personal data to better understand our customers and supporters, you are helping us to make better decisions, improve our services for people with fibromyalgia, fundraise more efficiently and, ultimately, achieve our goals of reaching, supporting and improving the lives of people living with fibromyalgia. 

If you have any questions about how we store and use personal data or about this policy, please contact head office by emailing This email address is being protected from spambots. You need JavaScript enabled to view it. or by calling 0141 255 1570. You can also change your details or ask us to stop using data or sending marketing communications. 

This privacy policy sets out how Fibromyalgia Action UK may collect and use personal information and data. By using our site or any of our services, or providing us with any personal information, you are accepting and consenting to your personal information being used as described in this policy.  

Who we are 

In this policy, ‘we’ refers to ‘Fibromyalgia Action UK’, a registered charity in England and Wales (1042582) and registered company limited by guarantee in Scotland (SC 492045). The registered address of Fibromyalgia Action UK is Suite 3007, Mile End Mill, Abbeymill Business Centre, 12 Seedhill Road, Paisley PA1 1JS. 

How we collect information about you 

We collect information in the following ways: 

When you give us information directly 

You may give us your details when you sign up for one of our events, receive support from our helpline or another service, volunteer with us, join a local group, enter our raffle or lottery, order an information booklet, tell us your story, make a donation, purchase our products or communicate with us. Sometimes, your information may be collected by an organisation working for us (for example, a professional fundraising agency), but we are responsible for your data at all times. 

We will collect and process all the information that you give us, as well as responses given to you by our staff or volunteers.  This may include sensitive personal data where you volunteer this information. We may also collect and retain your information if you send feedback about our services or make a complaint. 

When you visit our websites, information about your visit is recorded and stored on your own computer, using cookies. Cookies are text files which identify your computer to our server. Cookies in themselves do not identify the individual user, just the computer used. You can find more information on how we use cookies later on in this policy. Beyond this, you will remain anonymous unless you log in. When you log in and browse Fibromyalgia Action UK’s website, including that of the online shop, you will remain logged in until you close your session by logging out or depending on the site you are logged out due to a session time out from when you last access a page.  

When you give us information indirectly  

Your information may be shared with us by independent event organisers, for example the Great North Run or fundraising sites like JustGiving. These independent third parties will only do so when you have indicated that you wish to support Fibromyalgia Action UK and with your consent. You should check their privacy policy when you provide your information to understand fully how they will process your data. 

When you give permission to other organisations to share your details 

The information we get from other organisations may depend on your privacy settings or the responses you give, so you should regularly check them. This information comes from the following sources: 

  • Third party organisations: You may have provided permission for a company or other organisation to share your data with third parties, including charities. This could be when you buy a product or service, register for an online competition or sign up with a comparison site. 

  • Social media: Depending on your settings or the privacy policies for social media and messaging services like Facebook, WhatsApp, LinkedIn, Instagram or Twitter, you might give us permission to access information from those accounts or services. 

Information that is publicly available  

We may obtain and store information about you that is available publicly from third party sources such as from Companies House and information that has been published in articles/newspapers. 

What personal information we collect and how we use it 

The type and quantity of information we collect and how we use it depends on why you are providing it. 

Supporting us 

If you support us, for example, through fundraising, making a donation, volunteering, buying something from our online shop, signing up for an event, campaigning for us, or requesting information from us, we will usually collect: 

  • Your name; 
  • Your address and other contact details (including email address); 
  • Your date of birth;  
  • Your bank or debit/credit card details (for purchases only). 

Where it is appropriate, we may also ask for: 

  • Information about your experiences of living with fibromyalgia (if relevant). We will never make this question mandatory, and only want to know the answer if you are comfortable telling us;  
  • Information relating to your health (for example, if you are taking part in a high-risk event);
  • Why you have decided to support us. We will never make this question mandatory, and only want to know the answer if you are comfortable telling us. 

We will mainly use your data to: 

  • Support you if you are living with fibromyalgia, or supporting someone else living with fibromyalgia, for example, via our helpline and our online community. Other programmes include local support groups and other activities aimed at supporting people with fibromyalgia; 
  • Provide you with the services, products or information you asked for; 
  • Administer your donation or support your fundraising and participation in our activities, including processing gift aid; 
  • Keep a record of your relationship with us; 
  • Manage your marketing preferences; 
  • To share your story with fellow supporters, with your consent; 
  • Ensure we know how you prefer to be contacted;
  • Understand how we can improve our services, products or information. We may combine information you provide to us with information available from external sources;
  • Manage feedback we receive from you. 

We will not: 

  • Contact you with or about information you have not requested; 
  • Sell your data to another organisation. 

Professionals and representatives of third party organisations 

If you seek information from us in a professional capacity (for example if you are a healthcare professional, an employee of a company that supports us or a Trustee in a registered charity), we may treat your details slightly differently from other customers and supporters. 

As well as your contact details and any financial information we require to process transactions, we will also store details about your role and who you work for. We may also ask for information about your experiences linked to fibromyalgia. 

We will mainly use your data to: 

  • Provide you with the information, services or products you asked for; 
  • Administer your organisation’s donation or support fundraising and participation in our activities; 
  • Keep a record of your organisation’s relationship with us and your role in this; 
  • Send you relevant marketing materials; 
  • Understand how we can improve our services, products or information; 
  • Manage feedback we receive from you. 

Public figures and fibromyalgia champions 

We may obtain and store details about people who publicly express support or interest in fibromyalgia-related issues. We will also store details of public figures, such as Members of Parliament (MPs), who express an interest in our work and the reason for this interest. 

We will use this information to contact people in order to better raise awareness of fibromyalgia and our work, and to seek changes to public or other policies when this is appropriate. 

Employees and job applicants 

We will maintain detailed employee records to manage current staff and to make payments to current and past employees. We will also maintain records of all trustees of the charity, past and present. We may store their personal details alongside any other information provided by people who express an interest in working for us, whether via a formal application or expressed informally. 

Researchers and suppliers 

We will store contact details and financial details of researchers and suppliers in order to manage and process grants, contracts and payments. We will retain a directory of researchers and suppliers in order to issue future offers. 

How we keep your data and who has access 

We ensure that there are appropriate technical controls in place to protect your personal details. For example, where transaction take place through ourselves or third party websites, we ensure that they are always encrypted and our network is protected and routinely monitored.   

We undertake regular reviews of who has access to information that we hold to ensure that your information is only accessible by appropriately trained staff, volunteers and contractors. 

We will only share your details in exceptional circumstances if we are under a duty to disclose your personal information in order to comply with any legal obligation (for example to government bodies and law enforcement agencies), where we have good reason to believe that a person’s vital interests are at stake (for example if someone reports serious self-harm or a serious intention of harming someone else) or in order to enforce or apply our rights (including in relation to our website or other applicable terms and conditions), or to protect Fibromyalgia Action UK. 

We will only ever share your data in other circumstances if we have your explicit and informed consent. 

We keep records for as long as is required in accordance with legal requirements and tax and accounting rules. We retain contact details for marketing and suppression purposes until a request is made to remove information. We may also keep internal records of any contact with you indefinitely. Where your information is no longer required, we will ensure that it is disposed of in a secure manner. For example, if you send us information in paper format, we may scan this and securely destroy the paper copy. 

Keeping your information up to date 

We use our best endeavors to keep your details up to date and accurate. We would appreciate it if you let us know if your contact details change. If you would like to change your preferences or update the details we hold about you, please contact our head office by emailing: This email address is being protected from spambots. You need JavaScript enabled to view it. or by calling 0141 255 1570. 

Your rights 

You can request we delete or dispose of records (subject to legal and accounting requirements), ask us to stop processing your personal data subject to certain constraints or challenge the results of any decisions or profiling. Alternatively, you can request that we hold a record solely for the purpose of suppressing other uses. If you remove your data completely, this may lead to us contacting you in the future if we receive a valid consent to do so via other means. Please contact our head office by emailing: This email address is being protected from spambots. You need JavaScript enabled to view it. or by calling 0141 255 1570. 

If there are any legitimate and factual discrepancies in the information we provide, please let us know and we will correct them. 

Changes to this policy 

We may change this privacy policy from time to time. If may make any significant changes in the way we treat your personal information, we will make this clear on the Fibromyalgia Action UK website or by contacting you directly. 

Further information about how we use data 

Direct marketing 

We only want to contact supporters who want to hear from us in the ways that they want to hear from us. Our forms have clear marketing preference questions and we include information on how to opt out when we send you marketing. 

If you have given us your consent to contact you by email and telephone, we may contact you for marketing purposes by using that channel. If you subscribe to any regular emails, you also allow us to email you other marketing and advertising materials. We may also contact you by email or telephone for service delivery purposes (e.g. where you place an order on our site or where you make a donation). 

If you have provided us with your postal address, then we may send you direct mail for fundraising, campaigning or research unless you have told us that you would prefer not to hear from us in this way. 

We may contact professionals directly, without opt-in consent. However, we will always offer an opportunity to refuse marketing materials from us. 

With your consent, we will contact you to let you know about the progress we are making and to ask for donations or other support. Occasionally, we may include information from partner organisations or organisations who support us in these communications. We make it easy for you to tell us how you want us to communicate, in a way that suits you. 

If you do not want to hear from us, that’s fine. Just let us know when you provide your details, or contact us on 0141 255 1570 or This email address is being protected from spambots. You need JavaScript enabled to view it. 

We do not sell or share personal details to third parties for the purposes of marketing. But, if we run an event in partnership with another named organisation, your details may need to be shared. We will be very clear what will happen to your data when you register. 

Sharing your story 

Some people choose to tell us about their experiences with fibromyalgia to help further our work by publicising the impact that fibromyalgia can have. They may take on a role as a volunteer or provide case study. This may include them sharing sensitive information relating to their health and family life in addition to their biographical and contact information.  

We may use some of the information provided, including gender, ethnicity or the severity of fibromyalgia and other conditions people have experience of, to publicise our services, raise the profile of fibromyalgia in the media (including our website and social media platforms), fundraise, or recruit volunteers and campaigners. 

If we have the explicit and informed consent of the individuals, or their parent or guardian if they are under 18 years old, this information may be made public by us at events, in materials promoting our campaigning and fundraising work, or in documents such as our reports.  

Information about our use of cookies 

When you enter a site, your computer or other device may automatically be issued with a cookie. Like most websites, we use “cookies”, to help us make our site, and the way you use it better. 

A cookie is a small text file that we store on your browser or the hard drive of your computer if you agree (including phones and tablets). Cookies identify your computer to our server. Cookies in themselves do not identify the individual user, just the computer used. Cookies mean that a website will remember you and your preferences. They make interacting with a website faster and easier – for example by automatically filling your name and address in text fields.  

Our websites use cookies to distinguish you from other users of our websites. This helps us to provide you with a good experience when you browse our websites and also allows us to improve our sites. By continuing to browse the sites, you are agreeing to our use of cookies. 

What cookies we use 

  • Strictly necessary cookies. These are cookies that are required for the operation of our websites. They include, for example, cookies that enable you to log into secure areas of our websites, use a shopping cart or make use of e-billing services. 
  • Analytical/performance cookies. They collect anonymous information and allow us to recognise and count the number of visitors and to see how visitors move around our websites when they are using it. This helps us to improve the way our websites work, for example, by ensuring that users are finding what they are looking for easily. 
  • Functionality cookies. These are used to recognise you when you return to our websites. This enables us to personalise our content for you, greet you by name and remember your preferences (for example, your choice of language or region). 
  • Targeting cookies. These cookies record your visit to our websites, the pages you have visited and the links you have followed. We will use this information to make our websites and the advertising displayed on it more relevant to your interests. We may also share this information with third parties for this purpose. 

Please note that third parties (including, for example, advertising networks and providers of external services like web traffic analysis services) may also use cookies, over which we have no control. These cookies are most likely to be analytical/performance cookies or targeting cookies. 

You can block cookies on your internet browser by activating the setting on your browser that allows you to refuse the setting of all or some cookies. However, if you use your browser settings to block all cookies (including essential cookies), you may not be able to access all or parts of our sites. 

For more information about cookies generally we suggest you visit www.aboutcookies.org 

Tracking and analysis of website traffic 

We use tracking technologies and cookies to enable us to provide you with the best possible user experience and to ensure that we make the most out of our fundraising investments. These technologies record information you or your computer provide to our website. Fibromyalgia Action UK’s site is built on a platform called Joomla! which has tracking, and analytics built into it. This information will be used in line with our privacy policy. 

We use cookies to improve our website and your experience when using it. Cookies used for the essential operation of the site have already been set. To find out more about the cookies we use and how to delete them, see our Cookie Use Page.

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