Privacy Notice


At FOP Friends, we are committed to protecting and respecting your privacy.

This Notice explains when and why we collect personal information about people.

This Notice is in line with the GDPR 2018 guidelines. We may update this Notice from time to time, so please check our website occasionally, or contact us, to ensure you’re happy with the changes.

References to “we”, “us”, or “our” are references to FOP Friends.

FOP Friends is registered with the Information Commissioner’s Office (ICO)

Who are we?

FOP Friends is a charity registered in England and Wales 1147704, and is also registered as a charity in Scotland SC046950. We are a charity dedicated to finding a treatment and a cure for fibrodysplasia ossificans progressive, FOP. We raise money to support finding a treatment for the disease; raise awareness of FOP to prevent misdiagnosis; and support the individuals and families affected by FOP.

How do we collect information about you?

We obtain personal information about you when you enquire about our charity, make a donation, register with us, or make a donation through a third-party fundraising site such as Virgin Money Giving. Website usage information is collected using cookies.

What is personal information?

The personal information, or data, we hold about you might include (but is not limited to): your name, address, phone number and/or email address.

How will we use the information about you? 

We will use your personal information to provide you with the information you have requested. We will use your name and address to acknowledge and thank you for your donation. With your consent, we will send you our quarterly newsletter and we may, from time to time, send you information about updates and developments about FOP which we think you may find interesting. You can opt-in or out of any or all of these services at any time.

Who will see the personal information we hold?

The personal information we collect about you will be used by our staff (and volunteers) for the reasons stated above. We will never sell, share or rent your personal information with any other organisation or company. We will never sell any information about your web browsing activity.

What about marketing?

We may send you information about upcoming events or products, directly related to living with FOP, which we think you may find useful or interesting. We will never pass your information on to any other third parties who may want to sell you products or services or ask you to support their cause.

How do we keep your information safe?

We take the security of your personal information extremely seriously. We have implemented appropriate physical, technical and organisational measures to protect the personal information we have under our control, both on and off-line, from improper access, use, alteration, destruction and loss. We will only keep your information as long as is reasonable and necessary, which may be to fulfil statutory obligations (for example, the collection of Gift Aid), and for as long as you are happy to keepreceiving information from us. From time to time, we may send you an email. For ease of use and compatibility, communications will not be sent in an encrypted form. Whilst we endeavour to keep our systems and communications protected against viruses and other harmful effects, we cannot bear responsibility for all communications being virus-free.

Do we use cookies?

Yes. Cookies are text files placed on your computer to collect standard internet log information and visitor behaviour information. For further information please read our Cookies Policy.

What about emails?

From time to time we may send out email campaigns regarding issues related to living with, and finding a cure for FOP. We use MailChimp as our provider. There is an opt out button at the bottom of all these emails and you can opt out at any time.

Can I see the information you hold about me?

You have the right to request a copy of the information that we hold about you. If you would like a copy of some or all of your personal information, please contact us. We want to make sure that your personal information is accurate and up to date. You may ask us to correct or remove information you think is inaccurate.

How do I contact you if I have any questions?

Please contact us if you have any questions about our Privacy Notice or the information we hold about you. Please email:

Will this notice change?

We may change this Privacy Notice from time to time. If we make any significant changes in the way we treat your personal information, we will make this clear on the FOP Friends’ website or by contacting you directly.

If you have any questions, comments or suggestions, please let us know by contacting: Data Compliance

Team, FOP Friends, 1 Cumberland Road, Sale, Cheshire, M33 3FR.

FOP Friends 1147704: Privacy Notice Februayr 2018

All Content (C) Copyright FOP Friends 2018

FOP Friends is a Registered Charity in England and Wales #1147704

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