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Fragile X Society Privacy Policy


Our promise


We promise to respect all personal information. That includes any information you share with us and any personal information we receive from other organisations. We will keep it safe and secure and will not use it for any purpose you would not reasonably expect us to. 

Our Privacy Policy


This privacy policy will explain how and why we use your personal information, to ensure you remain informed and in control of your information. In order to ensure that you can find the information that you need, we have broken it into sections below: 

What is personal information?


Personal information means any information that may be used to identify you, such as your name, title, telephone number, email address, or mailing address, etc. Given the aims of our charity, we may also ask you about sensitive information (special category data) such as details about diagnosis. You may also choose to share photos, videos or stories with us, which also count as personal information.

Why we collect your personal information and how we use it


As with all of our activities, the aim of us collecting and retaining data is to be able to provide a service of the greatest benefit to the Fragile X community. We only retain data where there is a legitimate interest and lawful basis to do so, in line with our charity’s aims. 

Listed below are examples of the ways in which we may use your personal data. The list is not exhaustive but aims to give you an overview of the types of ways we may use your data.

  • Keeping a record of any communications between us and you, for example emails and phone calls in relation to our helpline, in relation to fundraising activities you are involved in, or other services

  • Keeping a record of other interactions too, such as requests for leaflets or attending an event

  • Contacting you to keep you up to date with the charity’s activities, and the latest information about Fragile X

  • Processing financial transactions such as donations, entering a paid event or setting up a Direct Debit. This includes processing gift aid with HMRC if relevant

  • Contacting you about external research related to Fragile X which is taking place, if you have agreed to do so when being signed up as a member

  • Managing and improving how we communicate with you – how you prefer to be contacted, and what information you want to receive. We might contact you about our campaigns, events, appeals, volunteering, news, information and advice, as well as other ways you can support the Fragile X Society

  • Researching the interests, behaviours, demographics (for example, age, sex) and trends of the people who are using our services and of our membership.

We will always check with you that you are happy with us retaining and using any data about you before we do so.  


You have the option to say no to us retaining your information or for us to remove the information that you have shared with us, though please bear in mind that if you choose not to agree to this, it may affect our ability to carry out the tasks above for your benefit, or the work of the charity. For further information on updating your preferences or unsubscribing, please see the section below.  

Where we collect your personal information from


You have the right to be informed about the collection and use of your personal information. Before we collect personal information from you, we will always give you the opportunity to confirm you are happy for us to do so, and provide you with privacy information.


There are two main ways in which we collect personal information about you: directly or indirectly (including the use of third parties).



You may give us your information in order to:

  • Join as a member of the charity

  • Seek information or support from us (such as via our Helpline)

  • Sign up for one of our events

  • Share your story (such as via our newsletter, website or social media)

  • In relation to fundraising (for instance: fundraise on our behalf, add Gift Aid to your donation, make a donation)

  • Offer to support us through volunteering

  • Purchase our products

  • Or otherwise communicate with us




Your information may be shared with us by other organisations, when you have consented for them to do so. You should check the privacy information for these organisations when providing consent to understand how they may use your data. These organisations may include third party organisations such as:

  • Independent event organisers (such as the London Marathon or other challenge activity agent)

  • Fundraising sites (such as Just Giving or Virgin Money Giving).


We will also ensure that organisations are complying with the relevant legislation when sharing your information with us. We may also use publicly available information. For example, we are subject to many legal and regulatory obligations and standards. We employ appropriate due diligence of donors and donations as well as implementing robust financial controls that help protect the Fragile X Society from abuse, fraud and money laundering. We may ethically screen supporters to minimise the risk of associating ourselves with an individual or organisation that conflicts with our values.

Use of our website (including Cookies)

Our website is built via Wix. Like most websites, Wix use cookies on their platform (including our website), in a way which complies with EU legislation. Cookies mean that a website will remember you. They’re small text files that sites transfer to your device.

There are two types of cookies (both used on Wix sites):

  • Session (Transient) cookies: these cookies are erased when you close your browser, and do not collect information from your device. They typically store information in the form of a session identification that does not personally identify the user.

  • Persistent (Permanent/Stored) cookies: these cookies are stored on your hard drive until they expire (i.e based on a set expiration date) or until you delete them. These cookies are used to collect identifying information about the user, such as Web surfing behaviour or user preferences for a specific site.


In addition, we use Google Analytics to gain usage information about our website, so that we can better understand the need for our services and improve the site. We also collect domain information (e.g. IP address) as part of our analysis of the use of the website. This data enables us to become more familiar with how people visit our site, how often they visit and what parts of the site they visit most often. This information is collected automatically and requires no action on your part. This information is only processed in a way which does not identify anyone. We do not make, and do not allow Google to make, any attempt to find out the identities of those visiting our website.

You should also check the settings on your browser, devices and/or operating systems to check what information you are giving permission to share when you browse the internet.

How we store your data, and how long for

We are committed to sharing your data securely, and ensuring that it is accessible only by those working on behalf of the Fragile X Society, who have agreed to work with data responsibly and securely according to our policies. We ensure that all locations in which your data are stored are secure and compliant with the relevant legislation.

We only store information as long as it is required for the purpose it was originally obtained for. Therefore, the length of time we store your information for depends upon what the information is and what purpose it is retained for. The details of this are outlined in our data retention policy, which we review annually. We regularly review the information that we hold and will ensure that any data no longer required is securely deleted or disposed of.

How we keep your data safe

We ensure that the appropriate safe guards are in place to ensure that the information you share with us is kept safe, and only accessed by those who have permission to do so. We check that all places where we store data are compliant with the latest legislation (GDPR), and in keeping with our high standards.  

We never have, and never will share data with other organisations for marketing purposes. There are only very specific situations in which we may share your information. We may share your information, with your consent, to other professionals we work with as part of our service to you. For instance, with your permission, we may contact a specialist advisor of the charity or a professional working with you, as part of our helpline service. This will always be with your explicit agreement. The exceptions to this are if there is a safeguarding concern or we are bound by law and in these circumstances we will still seek to gain your consent first, but if you choose not to consent we must follow our safeguarding policy or legal obligations. A copy of our safeguarding policy can be provided on request.

Sometimes if you are sharing a photo or story with us, we will ask whether you are happy for us to share this publicly via ‘all media’. We use all media sources available to us as a charitable organisation to inform, raise understanding of Fragile X and to generally raise the profile of the work of the Fragile X Society. We also promote fundraising and volunteering opportunities. We commonly do this through all social media platforms, our web pages, media press release and in house communications such as email and newsletters. We will always make this clear to you where we are asking whether you are happy for us to share information in this way.

Use of Children's Data

Where we are providing an information and advice service to children and young people, or they otherwise wish to be involved in our charitable activities, we will only process their personal information if we have written parental consent and if we need the data in order to provide a service to them. In relation to fundraising, we will always take the appropriate precautions if young people are interested in supporting us, and seek guidance from best practice organisations (such as the Institute of Fundraising).

In addition, where relevant, parents or legal guardians may provide personal information about their children as part of membership registration (such as name, age, diagnostic status, etc). Prior to the young person turning 16, we will contact them to find out if they would like us to retain this information and stay in touch with them. If they do not opt-in to this (or their legal guardian does not do so), we will delete this information.

Your legal rights

You have the right to be in control of your information. Outlined below are your legal rights and information on how you can act upon them. If you would like to speak to us about any of these issues, you can contact us on 01371875100 or

  • The right to access your personal information

You have the right to request a copy of the personal data we hold on you. We will fulfil any requests within one month. As a small charity with limited administrative capacity, we charge a £10 fee per subject access request.

  • The right to edit and update your personal information

The accuracy of your personal information is important to us, if the information we hold is inaccurate or incomplete, please let us know and we will update it as soon as possible.

  • The right to be forgotten

You do have the right to request the deletion or removal of your personal information where there is no compelling reason for its continued processing. We will review each request on a case by case basis.

We will endeavour to comply with your request without delay and in any event, within one month of receiving your request.

  • The right to complain to a supervisory authority if you believe we have not handled your personal information in accordance with the data protection laws

You can always speak to us about issues relating to data protection. This includes if you wish to ask a question, make a complaint or raise a concern about how we process your personal information. You can contact us on or 01371875100.

If you are not happy with how we have handled your complaint, or you believe that your data protection or privacy rights have been infringed, or for other reasons would rather not contact us, you have the right to complain to the Information Commissioner's Officer (ICO), which oversees the protection of personal data in the UK, or the Fundraising Regulator, which is responsible for overseeing fundraising activities carried out by charities in the UK.

Updating your preferences or unsubscribing

You can change your contact preferences by contacting us. You can also change your preferences through links in the bottom of emails we send to you. 

Updates and changes to our policy


We reserve the right to update this policy and will review it regularly. You should check this policy which will always be available on our website or by request. If there are any major changes to our policy, if appropriate we will add a notice on our website or contact you.

This privacy policy was last updated in May 2018.

Inappropriate content


If you post or send any content that we believe to be in breach of any laws or otherwise inappropriate, such as defamatory content, we may use your personal information to inform relevant third parties such as the police.

Controller of personal information


We are the Fragile X Society, the only organisation dedicated to individuals and families living with Fragile X* in the UK. We are registered as a charity in England and Wales (Charity Number: 1127861) and Scotland (Charity Number: SC047332). If you have any questions about this privacy policy or data protection, you can contact us on 01371875100 or

*Fragile X is a family of conditions including: Fragile X Syndrome, Fragile X-associated Primary Ovarian Insufficiency (FXPOI), Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS), as well as other issues relating to the Fragile X pre-mutation.

Persona Information
Data collection and use
Where collect
Website and cookies
Storage and retention
Data safety
Children's Data
Legal Rights
Updating your preferences
Policy updates
Inappropriate content
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