Privacy Policy
MDS UK Patient Support Group
1. Who are we
Name: MDS UK Patient Support Group
Address: Unit B12, The Fuel Tank, 8-12 Creekside, London, SE8 3DX
Phone Number: 020 7733 7558
E-mail: info@mdspatientsupport.org.uk
Registered Charity No: 1145214
2. Our privacy policy
This privacy policy sets out how MDS UK Patient Support Group uses and protects any information that you give us when you use our website.
MDS UK Patient Support Group is committed to ensuring that your privacy is protected. Should we ask you to provide information that you can be identified by when using our website, it will only be used in accordance with this privacy statement.
MDS UK Patient Support Group may change this policy from time to time by updating this page. You should check this page from time to time to ensure that you are happy with any changes. This policy is effective from 25th May 2018.
3. The type of personal information we collect
We currently collect and process the following types of information:
- Personal details – for example:
- Name
- Contact details including physical addresses and email addresses
- Personal characteristics including gender, ethnicity and date of birth
- Information relating to MDS – for example:
- Your relationship to MDS
- Any information you share with us about your MDS. If you are not a patient, we may store information about the MDS of the person you support.
- Your preferences to receive information from us:
- Email new distributions including newsletters and information updates about MDS
- Surveys and information gathering that directly relate to MDS
- Your usage of our services:
- Attendance of patient support and patient information meetings
- Readership of emails
- Your IP addresses
- Your IP address is your computer’s individual identification number that is assigned to your computer when it is connected to the Internet. The information we collect via our website and Chat Forum may include your computer’s IP address which is automatically logged by our webserver. This information is collected by our website host in the United Kingdom.
- Cookies
- Cookies are small text files that may be automatically stored on your computer or mobile device by the websites you visit. Our cookies are required for the following purposes:
- Strictly necessary. Required for the operation of our website. They include, for example, cookies that enable you to log into secure areas of our website, such as the forum. You may disable these by changing your browser settings, but this may affect how the website functions.
- Analytical/performance. They allow us to recognise and count the number of visitors and to see how visitors move around our website when they are using it. This helps us to improve the way our website works, for example, by ensuring that users are finding what they are looking for easily. The cookies collect information in a way that does not directly identify anyone.
- Targeting/Marketing. These cookies record your visit to our website, the pages you have visited and the links you have followed. We use this information to make our website display on search more relevant to people affected by MDS and increase awareness on MDS on social platforms such as Twitter.
- For more on Cookies read our Cookie Policy.
- Cookies are small text files that may be automatically stored on your computer or mobile device by the websites you visit. Our cookies are required for the following purposes:
4. How we get personal information and why we have it
Most of the personal information we process is provided to us directly by you for one of the following reasons:
- Delivery of the charity’s objectives: To deliver on our objective to raise awareness of MDS, offer support and information to patients and families and campaign to increase the quality of life and make treatments available to those affected by Myelodysplastic Syndromes, we may require the recording of your contact details, communication history and connection to MDS UK Patient Support Group. Based on your personal information and marketing preferences we may contact you to promote MDS UK Patient Support Group and blood cancer news, information, events, and fundraising and marketing campaigns. At times we may need to use your personal information in order to prevent fraud or to identify any areas of misuse of our services.
- Fundraising and Marketing: MDS UK Patient Support Group undertakes a variety of fundraising and marketing activities which are aimed at raising income and/or awareness of the charity and its mission. Some of the channels we may use to market or fundraise are face-to-face activity, post, advertising (print, broadcast, phone, SMS and digital) and promotional materials. We may communicate with you using these methods to promote MDS UK Patient Support Group appeals, campaigns, sponsorship, events, or volunteering opportunities. We may also ask if you are able to provide Gift Aid on any of your donations.
- Analysis, Targeting, and Segmentation: In order to fund lifesaving Myelodysplastic Syndrome research, we must inform people of our mission and ask them to give us financial and campaigning support. Through the information that you give us, your interactions with us, and publicly available information, we will try to understand your interests so that we can personalise and tailor our communication with you.
5. How we use your information
MDS UK Patient Support Group may use your personal information to help us deliver on our aim to raise awareness of MDS, offer support and information to patients and families and campaign to increase the quality of life and make treatments available to those affected by Myelodysplastic Syndromes. We will always try to be as transparent and honest as possible regarding how we collect, use and store your personal information.
6. Sharing of information
Occasionally, we may need to share your information. We will only ever share your information to fulfil a request. Examples of this include:
- When you sign up to receive a paper copy of our handbook, your address will be shared with our printer Evolution Print & Design Ltd, to fulfil this postage request. Your data will only ever be used for the distribution of the handbook.
- When you sign up to receive a newsletter from us, your email address will be used within the MailChimp email client to fulfil the request for the newsletter. The data is held securely within the MailChimp platform.
- Using personal information to claim Gift Aid on your donations
7. Lawful processing
Under the UK General Data Protection Regulation (UK GDPR), the lawful bases we rely on for processing this information are:
- Consent: MDS UK Patient Support Group will only send you emails when we have your consent. We will only collect and use your personal information and in some cases sensitive personal information in the ways we have laid out in this privacy policy. You can withdraw or update your consent at any time for any or all our channels or activities by getting in touch with us at info@mdspatientsupport.org.uk
- Legitimate Interest: When it may not be practical to get consent from an individual, MDS UK Patient Support Group may still process personal information under legitimate interest. This is because the law allows personal information to be legally collected and used if it is in line with the legitimate business interest of the organisation. However, the processing of personal information still must be carried out in a fair and balanced way that does not overly impact the rights of the individual concerned.
8. How we store your personal information
- Your information is securely stored. To prevent unauthorised access or disclosure, we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect online
- Data Retention: We will hold your data for a reasonable period after your most recent interaction with us, in line with our data retention policy. Our retention periods are determined by best practice and/or legal requirements.
9. Your data protection rights
Under data protection law, you have rights including:
- Your right of access - You have the right to ask us for copies of your personal information.
- Your right to rectification - You have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.
- Your right to erasure - You have the right to ask us to erase your personal information in certain circumstances.
- Your right to restriction of processing - You have the right to ask us to restrict the processing of your personal information in certain circumstances.
- Your right to object to processing - You have the the right to object to the processing of your personal information in certain circumstances.
- Your right to data portability - You have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances.
You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you. Please contact us at the following address if you wish to make a request.:
Name: MDS UK Patient Support Group
Address: Haematology, Bessemer Wing, Kings College Hospital, Denmark Hill, London SE5 9RS
Phone Number: 020 7733 7558
E-mail: info@mdspatientsupport.org.uk
10. How to complain
If you have any concerns about our use of your personal information, you can make a complaint to us at
Name: MDS UK Patient Support Group
Address: Haematology, Bessemer Wing, Kings College Hospital, Denmark Hill, London SE5 9RS
Phone Number: 020 7733 7558
E-mail: info@mdspatientsupport.org.uk
You can also complain to the ICO if you are unhappy with how we have used your data. The ICO’s address:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Helpline number: 0303 123 1113
ICO website: https://www.ico.org.uk