Privacy statement and cookies

At Scleroderma & Raynaud's UK (SRUK) we are committed to protecting your privacy. This statement describes how SRUK collects and uses personal information about people who visit our websites. The terms of this statement may change, so please check it from time to time. Our privacy policy seeks compliance with the Data Protection Act ("DPA") 2018, the UK's implementation of the General Data Protection Regulation (EU) 2016/679 ("GDPR").

If you have any queries about this privacy statement please contact Scleroderma & Raynaud's UK, Bride House, 18-20 Bride Lane, EC4Y 8EE or email

How do we collect information?

We obtain personal information from you when you enquire about our activities, register with us, sign-up to our communications, make a shop purchase, attend our fundraising or charity events, make a donation to us, ask a question about Scleroderma or Raynaud's or otherwise provide us with personal information. We may also receive information about you from third parties, if you have given them permission to share this information and indicated that you wish to support SRUK, for example from our service providers or from a friend who wants to tell you about our websites or the fundraising activities we carry out.

What information do we collect?

The personal information we collect might include name, date of birth, email address, postal address, telephone number and credit/debit card details. We may also collect sensitive personal information for the purpose of supporting you, for example, health information if you tell us about your condition or the condition of a friend or relative. We ensure that all data that is collected, stored and used is in accordance to a lawful basis under the DPA.

We also gather general non-personal information about the use of our websites, such as which pages users visit most often and which services, events or facilities are of most interest. We may also track which pages users visit when they click on links in SRUK emails. We may use this information to personalise the way our websites are presented when users visit them, to make improvements to our websites and to ensure we provide the best service for users. Wherever possible we use aggregated or anonymous information, which does not identify individual visitors to our websites.

How do we use this information?

We will use your personal information:

•to provide you with the services, products or information you have requested;

•to create an account for you if you register with us;

•for administration purposes;

•to further our charitable aims, including for fundraising activities

•to administer your participation in an event that we host;

•to keep you up-to-date with the impact of your support.

As part of this, we may analyse the personal information we collect to create a profile of your interests and preferences so that we can contact you in the most appropriate way and with the most relevant information. Where relevant, we may also assess your personal information for the purposes of fraud and credit risk reduction.

We may need to share your information with our service providers for the purposes described above, from time to time, however it would only be done out of necessity and based on a genuine purpose, which would be recorded on our systems. If you wish to obtain information on who we share your information with or would like to amend your preferences, please contact us..

Examples of how SRUK may share your data:

●With third party service providers and agents: We may engage third party companies or individuals, such as third party payment processors, mailing houses etc, to process information on our behalf.

●To comply with laws: To comply with legal or regulatory requirements and to respond to lawful requests, court orders and legal process.

●To enforce our rights, prevent fraud and for safety: To protect and defend the rights, property, or safety of us or third parties, including enforcing contracts or policies, or in connection with investigating and preventing fraud.

Contacting you and lawful basis

For marketing purposes, we may use your personal information such as your phone number and address to contact you via phone or post about SRUK and the work we do. We would only contact you because you have shown interest in SRUK before, such as, but not limited to, contacting us directly, attending our events, giving us donations, signing up for newsletters or participating in surveys.

However, if you would not like to be contacted, you could always opt-out at any given point by contacting us either via email, phone or post.

We would contact you for marketing purposes via email or SMS only if you have given us your consent to do so. If you would prefer to be contacted via email or SMS, do let us know and we would regard it as your explicit consent to be contacted via this method. This would constitute the lawful basis for our communication with you. If at any point you wish to withdraw your consent, you can always do so by contacting us.

For our shop sales, we are required to collect details such as your name, address and phone number in order to perform the contract in fulfilling your order from our online shop. In terms of collecting payments for shop orders, we do not store your full card or payment details on SRUK's system and it is collected and processed by our third party payment processors who would process your data securely.

We may contact you from time to time based on your purchase history either in regards to a recent order, shop promotion or item feedback and we may rely on legitimate interest in contacting you for these purposes. If you do not wish to be contacted in this way please inform us by post or email.


To provide support to you, fundraising is key to SRUK. From time to time, we carry out targeted fundraising activity to ensure that we are contacting you with the most appropriate communication, one that you would be legitimately interested in. In doing so, we may use profiling techniques or use third party wealth screening companies to provide us with general information about you. Such information is compiled using publicly available data about you or information that you have already provided to us.

This activity assists us in understanding the background of the people who support us. It helps us make appropriate requests to supporters who may have the means and the want to give more. If you wish to opt out of your data being used for profiling and wealth screening techniques, please contact us.

Your choices

You have a choice about whether you want to receive information about our progress and fundraising activities. We will not use your personal information for marketing purposes if you have indicated that you do not wish to be contacted. You can change your marketing preferences at any time by contacting Scleroderma & Raynaud's UK, Bride House, 18 -20 Bride Lane, EC4Y 8EE or email

Under 16s

SRUK is concerned with protecting the privacy of children aged under 16. Where appropriate we would seek consent from a parent or guardian before collecting personal information about a child aged under 16.

Do we use cookies?

Please refer to our cookie policy for details of how we use cookies and the type of cookies served through our websites.

How do we protect personal information?

All of our online forms are protected by encryption. We also use a secure server when you make a donation or payment via our websites. We take appropriate measures to ensure that the personal information disclosed to us is kept secure, accurate and up to date and kept only for so long as is necessary for the purposes for which it is used. Due to the lifelong nature of Scleroderma and Raynaud's, we normally keep records of your personal information on our system for your lifetime if you have contacted us before. This reflects our aim to support you as best we can throughout living with these conditions. If however, you wish to not have your personal data kept on our system any longer, please contact us and we will remove your personal information.

For shop sales or financial transactions, we would store your necessary data on our records as is legally required to produce accurate financial records for HMRC compliance.

If you are made aware of a potential breach of your personal information, please let us know as soon as possible as we have systems in place to remedy the situation as best we can.

Will we disclose the information we collect to outside parties?

As indicated above, we may pass your information to our service providers, for the purpose of completing tasks and providing services to you. Where we use service providers we will make sure there are appropriate controls in place.

We may also need to disclose your information if required by law (for example to government bodies and law enforcement agencies) or if we have your permission to do so.

We will not sell any of your personal information or disclose to any parties who do not improve service provision.

Your consent

By providing us with your personal information, including sensitive information such as on your health, you consent to the collection and use of this in accordance with the purposes described in this Privacy statement.

Right of access and erasure

You have the right to ask for a copy of the information we hold about you and to have any inaccuracies in your information corrected or to erase the data that we have stored about you. SRUK would provide you with this information as requested without a charge unless the request is manifestly unfounded or excessive. We aim to respond to your request as soon as possible, latest within a month of your request. If you wish to exercise these rights, contact Scleroderma & Raynaud's UK, Bride House, 18 -20 Bride Lane, EC4Y 8EE or email


Our websites may include links to websites run by other organisations. SRUK is not responsible for the privacy practices of these other websites so you should read their privacy policies carefully.


If your personal details change, please help us to keep your information up to date by notifying us.

We may change the terms of this privacy statement from time to time. If we do so, we will post the changes here so please check from time to time. By continuing to use our websites you will be deemed to have accepted such changes.