Sickle Cell and Thalassemia
This website is operated by Croydon Sickle Cell & Thalassemia Support Group. We take your privacy very seriously therefore we urge you to read this policy very carefully as it contains important information about:
who we are,
how and why we collect, store, use and share personal information,
your rights in relation to your personal information, and
how to contact us and supervisory authorities in the event that you have a complaint.
Who we are
Croydon Sickle Cell & Thalassemia Support Group ('we' or 'us') collect, use and are responsible for certain personal information about you. When we do so we are regulated under the General Data protection Regulations which apply across the European Union (including the United Kingdom) and we are responsible as 'controller' of that personal information for the purposes of those laws.
The personal information we collect and use
a) Personal information you provide to us
We collect the following personal information that you provide to us:
Name, address, gender, age, health condition
Some examples of when we collect this information include:
when you register for our newsletter, when you enter our competitions, when you register for our events, when you subscribe to our membership. We do not collect sensitive personal information.
b) Sensitive personal information is
Sensitive personal information includes any information which relates to the following:
your genetic data
your biometric data
your ethnic origin
your political opinions
your religious beliefs
whether you belong to a trade union
your physical or mental health or condition
your sexual life, and
whether you have committed a criminal offence
We may request that you provide sensitive information, but if we do, we will in every instance explain why we are requesting it and how we intend to use it. We will only collect your sensitive personal information with your explicit consent.
Some examples of when we may request sensitive personal information include:
when recording accessibility needs
your physical or mental health condition
c) Personal information you provide about third parties
If you give us information about another person, you confirm that the other person has appointed you to act on their behalf and agreed that you:
shall consent on their behalf to the processing of their personal data;
shall receive any data protection notices on their behalf;
shall consent on their behalf to the transfer of their personal data abroad; and
shall consent on their behalf to the processing of their sensitive personal data.
d) Monitoring and recording communications
We may monitor communications such as emails and telephone calls for the following purposes:
training, insurance, targeted campaigns and support
How we use your personal information
We collect information about our users for the following purposes:
statistical analysis, health trends and inequalities
Who your information may be shared with
We may share your information with:
Law enforcement agencies in connection with any investigation to help prevent unlawful activity and local authorities under our duty of care
We will not share your personal information with any other 3rd parties.
We would like to send you information about products, services, offers, competitions and our business which may be of interest to you. Such information could be sent by post, email, telephone, text message or automated call.
We will ask whether you would like us to send you marketing messages on the first occasion that you provide any relevant contact information (i.e. on purchase, signing up to a newsletter, entering a competition etc). If you do opt in to receive such marketing from us you can opt out at any time (see 'What rights do you have?' below for further information). If you have any queries about how to opt out, or if you are receiving messages you do not want you can contact us using the details provided below.
Whether personal information has to be provided by you, and if so why
The provision of the following information is required from you:
name, address, telephone number, email address, health conditions
This helps the service to identify gaps in provision and provide targeted support and will inform research.
We will inform you at the point of collecting information from you, whether you are required to provide the information to us.
How long your personal information will be kept
We will hold your personal information for the following periods:
Each type of personal information will be stored for 6 years
These periods are no longer than necessary in each case.
Reasons we can collect and use your personal information
We rely on the following as the lawful basis on which we collect and use your personal information:
Consent, legitimate interests
The legitimate interests relied upon are to provide information to support our welfare rights advice to members and their families and carers.
The basis on which we may process your sensitive information (i.e. special category as in the GDPR) is that:
Processing is vital to protect the interests of our members and service users
Consequence of our use of your personal information
The consequence to you of our use of your personal information is that you will be presented with updates on the work of the charity, planned events and fundraisers. You will be given access to advice and information through newsletters and promotional materials.
Keeping your information secure
We have appropriate security measures in place to prevent personal information from being accidentally lost, or used or accessed in an unauthorised way. We limit access to your personal information to those who have a genuine business need to know it. Those processing your information will do so only in an authorised manner and are subject to a duty of confidentiality.
We will also use technological and organisation measures to keep your information secure.
We are certified to ISO 27001. This family of standards helps us manage your information and keep it safe and secure.
We also have procedures in place to deal with any suspected data security breach. We will notify you and any applicable regulator of a suspected data security breach where we are legally required to do so.
Indeed, while we will use all reasonable efforts to secure your personal data, in using the site you acknowledge that the use of the internet is not entirely secure and for this reason we cannot guarantee the security or integrity of any personal data that are transferred from you or to you via the internet. If you have any particular concerns about your information, please contact us using the details below.
Transfers of your information out of the EEA
We will not transfer your personal information outside of the EEA at any time.
Children and the validity of consent
Where we obtain consent from any user we will take reasonable steps to ascertain whether the user is over 13 years of age and whether the child is sufficiently informed to give valid consent. If the user is not, parental consent will be required to provide consent for the processing of any personal information.
What rights do you have?
Under the General Data Protection Regulation you have a number of important rights free of charge. In summary, those include rights to:
fair processing of information and transparency over how we use your use personal information
access to your personal information and to certain other supplementary information that this Privacy Notice is already designed to address
require us to correct any mistakes in your information which we hold
require the erasure of personal information concerning you in certain situations
receive the personal information concerning you which you have provided to us, in a structured, commonly used and machine-readable format and have the right to transmit those data to a third party in certain situations
object at any time to processing of personal information concerning you for direct marketing
object to decisions being taken by automated means which produce legal effects concerning you or similarly significantly affect you
object in certain other situations to our continued processing of your personal information
otherwise restrict our processing of your personal information in certain circumstances
claim compensation for damages caused by our breach of any data protection laws
For further information on each of those rights, including the circumstances in which they apply, see the Guidance from the UK Information Commissioner's Office (ICO) on individual's rights under the General Data Protection Regulations (
If you would like to exercise any of these rights please:
email, call or write to us
let us have enough information to identify you
let us have proof of your identity (a copy of your driving license, passport or a recent credit card/utility bill)
let us know the information to which your request relates
From time to time we may also have other methods to unsubscribe (opt-out) from any direct marketing including for example, unsubscribe buttons or web links. If such are offered, please note that there may be some period after selecting to unsubscribe in which marketing may still be received while your request is being processed.
Do you need extra help?
If you would like this policy in another format (for example: audio, large print, braille) please contact us using the details below.
How to complain
We hope that we can resolve any query or concern you raise about our use of your information.
The General Data Protection Regulation also gives you right to lodge a complaint with a supervisory authority, in particular in the European Union (or European Economic Area) state where you work, normally live or where any alleged infringement of data protection laws occurred. The supervisory authority in the UK is the Information Commissioner who may be contacted at or telephone: 0303 123 1113.
By notice on the website header
If you have any questions about this policy or the information we hold about you,
please contact us by:
telephone: 07305 953 422
Calls will be answered at the following times: Monday - Friday 0900 - 1700
Post: Croydon Sickle Cell & Thalassemia Support Group,
316 Whitehorse Road, Croydon, CR0 2LE