The Marfan Trust is committed to protecting your privacy and security. This policy explains how and why we use your personal data, to ensure you remain informed and in control of how we store your information.

Anyone who engages with the Marfan Trust will be asked to “opt-in” for marketing communications, in order to comply with the General Data Protection Regulation law. This means you’ll have the choice as to whether you want to receive these messages and be able to select how you want to receive them (email, phone, SMS or post).

You can decide not to receive communications or change how we contact you at any time. If you wish to do so please email [email protected].  

We will never sell your personal data, and will only ever share it with organisations we work with where necessary and if its privacy and security are guaranteed, or where we are required to by law.


Your personal data (i.e. any information which identifies you, or which can be identified as relating to you personally) will be collected used and stored by The Marfan Trust


Personal Data You Provide
We collect data you provide to us. This includes information you give when contacting us, making donations, volunteering, registering at one of our events, becoming a member, buying any of our products or using one of our services. For example:

  • personal details (name, date of birth, email, address, telephone, ethnicity, etc.) when you contact us; make a donation; join as a volunteer; register at an event, buy one of our products or become a member; or
  • financial information (payment information such as credit/debit card or direct debit details), and whether or not donations are gift-aided.

Information Created by your Involvement with Marfan Trust
Your activities and involvement with the Trust will result in personal data being created. This could include details of how you’ve helped us by volunteering or being involved with our campaigns and activities, or when you have made a donation or other payment to us or reached out to us via our helpline.

If you decide to donate to us then we will keep records of when and how much you give to a particular cause.

Information We Generate
We conduct research and analysis on the information we hold, which can in turn generate personal data. For example, analysing your location and ethnicity and involvement with our work can help us to further extend the work of the Marfan Trust.
Third Parties
We sometimes receive personal data about individuals from third parties, or vice versa. For example, if we are partnering with another organisation (e.g. you provide your information to another organisation we’re collaborating with on a project). These partnerships and how we collect and use your details will be explained at the point we collect data and on the platform we collect that data, whether it be a registration form or electronically such as via our website, Mailchimp, Eventbrite or other payment software providers we use to operate our website and web services e.g. Shopify, Go Cardless and Stripe.

Collection of data for our work can also involve third party platforms, who collect and store personal data on our behalf. We only work with platforms which have data protection policies compliant with the General Data Protection Regulations

We may also receive information about you from third parties. This can include information such as your name, postal address, email address, phone number, credit/debit card details and whether you are a tax payer so that we can claim Gift Aid.

As explained in Section 11 (Cookies and links to other sites), we may use third parties to help us conduct research and analysis on personal data (and this can result in new personal data being created).

We may collect information from social media where you have given us permission to do so, or if you post on one of our social media pages.

Sensitive Personal Data
We do not collect or store sensitive personal data (such as information relating to health, beliefs or political affiliation) about supporters and members. However there are some situations where this will occur (e.g. if you volunteer at an event and tell us about a pre-existing medical condition or if you choose to disclose medical and/or personal information with us via our helpline, or if required to do so by law). If this does occur, we’ll take extra care to ensure your privacy rights are protected.

Accidents or Incidents
If an accident or near-miss incident occurs at one of our events or involving one of our staff (including volunteers) then we’ll keep a record, which may include personal data and sensitive personal data, for as long as we are required to do so by law.

If you are a volunteer or helping us to lead an event then we may collect extra [MH5] information about you (e.g. references, criminal records checks, details of emergency contacts, medical conditions etc.). This information will be retained for legal reasons, and for safeguarding purposes and only for as long as necessary.


We only ever use your personal data with your consent, or where it is necessary in order to:

  • enter into, or perform, a contract with you;

  • comply with a legal duty;

  • protect your vital interests; and

  • for our own (or a third party’s) lawful interests, provided your rights don’t override these.

In any event, we’ll only use your information for the purpose or purposes it was collected for.

We use personal data to communicate with people, to promote the Marfan Trust and to help with fundraising. This includes keeping you up to date with our news, advice, updates, campaigns and fundraising information.

We use personal data for administrative purposes (i.e. to carry on our charity and Research work). This includes:

  • receiving donations (e.g. donations, direct debits or gift-aid instructions);
  • receiving payments for information leaflets, membership and products in our shop;
  • maintaining databases of our, members, supporters and volunteers;
  • performing our obligations under contracts; and
  • helping us respect your choices and preferences (e.g. if you ask not to receive marketing material, we’ll keep a record of this).


We will never sell your personal data. We may share personal data with partner organisations on specified projects. Occasionally, where we partner with other organisations, we may also share information with them (for example, if you register to attend an event being jointly organised by us and another organisation).


The Marfan Trust will be asking anyone who engages with us to “opt-in” for most communications[MH6] . This means you’ll have the choice as to whether you want to receive these messages and be able to select how you want to receive them (e.g. by post, phone, email, text etc.).

You can decide not to receive communications or change how we contact you at any time. If you wish to do so please email [email protected].

What Does "Marketing" Mean?
Marketing includes: 

  • news and information about our charity, campaigns and research;
  • volunteering opportunities and how you can help support the Marfan Trust;
  • appeals and fundraising (including donations, auctions, competitions, raffles etc.);
  • our events, activities and local groups;
  • leaving a legacy; and
  • taking part in projects  

When you receive a communication, we may collect information about how you respond to or interact with that communication, and this may affect how we communicate with you in future.

Newsletters and E-Communications
Marfan Trust distributes e-newsletters, e-communications and paper newsletters which keep people informed about our Support, Research and Education activities as well as our events. You can subscribe to these by clicking here https://www.marfantrust.org/pages/13-subscribe or by emailing [email protected]. You can choose to unsubscribe from this material at any time.

As a charity, we rely on donations and support from others to continue our work. From time to time, we may contact members and supporters with fundraising communications. This might be about an appeal, a competition we’re running, or to suggest ways you can raise funds, or include ways of making a donation.

As with other marketing communications, we’ll only contact you specifically about fundraising if you’ve opted in to receiving emails from us (and you can unsubscribe at any time). If you have opted Out we will not contact you, even to thank you for a donation. 


This section explains how and why we use personal data to build profiles which enable us to understand our supporters, improve our relationship with them, and provide a better supporter experience.

Anonymised Data
We may aggregate and anonymise personal data so that it can no longer be linked to any particular person. This information can be used for a variety of purposes, such as recruiting new supporters, providing advice to supporters, or to identify trends or patterns within our existing supporter base. This information helps inform our actions and improve our campaigns, products/services and materials and when making funding applications.


Photographs, Pictures, Stories and Competitions
We want young people to join in activities linked to the charity, and there are opportunities to be featured in our media and social media.

Parental Permission
If your child is under 18 then we’ll need permission from you as their parent or guardian for us to share a picture, photo or story with us.

Information for Parents
We take great care to protect and respect the rights of individuals in relation to their personal data, especially in the case of children.  If your child is under 18, we’ll only use his or her personal data with your consent

Marketing and Fundraising
We won’t send marketing emails, letters, calls or messages to under 18 year-olds. The exception to this would be if we ran a youth programme where we might need to contact them directly, but parental consent will be gained in the first instance.


We employ a variety of physical and technical measures to keep your data safe and to prevent unauthorised access to, use of, or disclosure of your personal information. 

Electronic data and databases are stored on secure systems and we control who has access to information.


Where We Store Information
The Marfan Trust operates in the UK and we store our data within UK. Some other organisations which provide services to us, including our website provider and host, Whitefuse, may transfer or store personal data outside of the UK, but we will only allow them to do this if your data is adequately protected. Data managed on our behalf by Whitefuse,is stored in the EU and is covered by all relevant EU data protection protocols.

Some of our systems also use US based company products. Examples of such companies are Microsoft and Google. It may be that using the products of such a US company result in personal data being transferred to or accessible from the US. However, we’ll allow this as we are certain personal data will still be adequately protected (for example: Microsoft is certified under the USA’s Privacy Shield scheme).

How Long We Store Information
We will only use and store information for so long as it is required for the purposes it was collected for. How long information will be stored for depends on the information in question and its use.

We continually review what information we hold and delete what is no longer required. We never store payment card information. The only service provider organisations that may store payment information in secure encrypted format are leading donation and payment provider organisations that take payments on our behalf such as: Just Giving, Virgin Money, PayPal, Stripe, Go Cardless and Shopify.


We want to ensure you remain in control of your personal data. Part of this is making sure you understand your legal rights, which are as follows:

  • the right to confirmation as to whether or not we have your personal data and, if we do, to obtain a copy of the personal information we hold (this is known as subject access request);
  • the right to have your data erased (unless we have a requirement in law to  keep it);
  • the right to have inaccurate data rectified;
  • the right to object to your data being used for marketing or profiling; and
  • where technically feasible, the right to have personal data you have provided to us which we process automatically on the basis of your consent or the performance of a contract. This information will be provided in a common electronic format.

Please keep in mind that there are exceptions to the rights above and, though we will always try to respond to your satisfaction, there may be situations where we are unable to do so.

If you would like further information on your rights or wish to exercise them, please write to our Data Protection Officer: Victoria Hilton at [email protected].   

You can complain to the Marfan Trust directly by contacting our data protection point of contact, using the details set out above. If wish to make a complaint (including a complaint about fundraising activity) which does not directly relate to your data protection and privacy rights, you can do so by contacting the Marfan Trust. If you are not happy with our response, or you believe that your data protection or privacy rights have been infringed, you can complain to the UK Information Commissioner’s Office which regulates and enforces data protection law in the UK. Details of how to do this can be found at www.ico.org.uk.


Our website uses local storage (such as cookies) to provide you with the best possible experience and to allow you to make use of certain functionality (such as being able to shop online). Further information can be found in our Website Provider’s Cookies Policy at https://www.whitefuse.com/privacy-policy.  

Links to Other Sites
Our website contains hyperlinks to many other websites. We are not responsible for the content or functionality of any of those external websites (but please let us know if a link is not working by using the 'Contact us' information contained in our website).

If an external website requests personal information from you (e.g. in connection with an order for goods or services), the information you provide will not be covered by the Trust’s Privacy Policy. We suggest you read the privacy policy of any website before providing any personal information.

When purchasing goods or services from any of the businesses that our site links to, you will be entering into a contract with them (agreeing to their terms and conditions) and not with Marfan Trust.


We’ll amend this Privacy Policy from time to time to ensure it remains up-to-date and accurately reflects how and why we use your personal data. The current version of our Privacy Policy will always be posted on our website.

Last updated 23 February 2021

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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