We are committed to safeguarding the privacy of our website visitors; this policy sets out how we will treat your personal information.

1. What information do we collect?

We may collect, store and use the following kinds of personal information:

  • information about your computer and about your visits to and use of this website;
  • information that you provide to us for the purpose of registering with us;
  • information that you provide to us for the purpose of subscribing to our website services, email notifications and/or newsletters.

2. Using your personal information

Personal information submitted to us via this website will be used for the purposes specified in this privacy policy or in relevant parts of the website.

We may use your personal information to:

  • enable your use of the services available on the website;
  • send you email notifications which you have specifically requested;
  • send to you marketing communications relating to our business which we think may be of interest to you by post or, where you have specifically agreed to this, by email or similar technology (you can inform us at any time if you no longer require marketing communications);
  • deal with enquiries and complaints made by or about you relating to the website.

We will not without your express consent provide your personal information to any third parties for the purpose of direct marketing.

3. Disclosures

We may disclose information about you to any of our employees, officers, agents, suppliers or subcontractors insofar as reasonably necessary for the purposes as set out in this privacy policy.

In addition, we may disclose your personal information:

  • to the extent that we are required to do so by law;
  • in connection with any legal proceedings or prospective legal proceedings;
  • in order to establish, exercise or defend our legal rights (including providing information to others for the purposes of fraud prevention and reducing credit risk).

Except as provided in this privacy policy, we will not provide your information to third parties.

4. Security of your personal information

We will take reasonable technical and organisational precautions to prevent the loss, misuse or alteration of your personal information.

Of course, data transmission over the internet is inherently insecure, and we cannot guarantee the security of data sent over the internet.

You are responsible for keeping your password and user details confidential. We will not ask you for your password (except when you log in to the website).

5. Policy amendments

We may update this privacy policy from time-to-time by posting a new version on our website.  You should check this page occasionally to ensure you are happy with any changes.

6. Your rights

You may instruct us to provide you with any personal information we hold about you.  Provision of such information will be subject to the supply of appropriate evidence of your identity.

You may instruct us not to process your personal information for marketing purposes by email at any time.  In practice, you will usually either expressly agree in advance to our use of your personal information for marketing purposes, or we will provide you with an opportunity to opt-out of the use of your personal information for marketing purposes.

7. Third party websites

The website contains links to other websites. We are not responsible for the privacy policies or practices of third party websites.


Data Protection Policy

Definitions

Charity means the EHE Rare Cancer Charity (UK), a registered charity with charity no 1162472.
GDPR means the General Data Protection Regulation.
Responsible Person means the Chair of Trustees.
Register of Systems means a register of all systems or contexts in which personal data is processed by the Charity.

1. Data protection principles

The Charity is committed to processing data in accordance with its responsibilities under the GDPR.

Article 5 of the GDPR requires that personal data shall be:

  1. processed lawfully, fairly and in a transparent manner in relation to individuals;
  2. collected for specified, explicit and legitimate purposes and not further processed in a manner that is incompatible with those purposes; further processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes shall not be considered to be incompatible with the initial purposes;
  3. adequate, relevant and limited to what is necessary in relation to the purposes for which they are processed;
  4. accurate and, where necessary, kept up to date; every reasonable step must be taken to ensure that personal data that are inaccurate, having regard to the purposes for which they are processed, are erased or rectified without delay;
  5. kept in a form which permits identification of data subjects for no longer than is necessary for the purposes for which the personal data are processed; personal data may be stored for longer periods insofar as the personal data will be processed solely for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes subject to implementation of the appropriate technical and organisational measures required by the GDPR in order to safeguard the rights and freedoms of individuals; and
  6. processed in a manner that ensures appropriate security of the personal data, including protection against unauthorised or unlawful processing and against accidental loss, destruction or damage, using appropriate technical or organisational measures.”


2. General provisions

  1. This policy applies to all personal data processed by the Charity.
  2. The Responsible Person shall take responsibility for the Charity’s ongoing compliance with this policy.
  3. This policy shall be reviewed at least annually.
  4. The Charity shall register with the Information Commissioner’s Office as an organisation that processes personal data.


3. Lawful, fair and transparent processing

  1. To ensure its processing of data is lawful, fair and transparent, the Charity shall maintain a Register of Systems (see Appendix 1).
  2. The Register of Systems shall be reviewed at least annually.
  3. Individuals have the right to access their personal data and any such requests made to the charity shall be dealt with in a timely manner.


4. Lawful purposes

  1. All data processed by the charity must be done on one of the following lawful bases: consent, contract, legal obligation, vital interests, public task or legitimate interests.
  2. The Charity shall note the appropriate lawful basis in the Register of Systems.
  3. Where consent is relied upon as a lawful basis for processing data, evidence of opt-in  consent shall be kept with the personal data.
  4. Where communications are sent to individuals based on their consent, the option for the individual to revoke their consent should be clearly available and systems should be in place to ensure such revocation is reflected accurately in the Charity’s systems.
  5. The Charity will not share data with any third party organisations without the specific prior approval of the parties involved.


5. Data minimisation

  1. The Charity shall ensure that personal data are adequate, relevant and limited to what is necessary in relation to the purposes for which they are processed.
  2. The Charity holds minimal data for three specific objectives:
    • Minimum data is retained within the Charity’s financial system so that the Charity can meet its financial reporting and control obligations;
    • Email addresses are retained for future communications with different groups including patients and donors; and
    • Postal addresses are maintained where provided by individuals to receive materials or documents from the Charity.


6. Accuracy

  1. The Charity shall take reasonable steps to ensure personal data is accurate.
  2. Where necessary for the lawful basis on which data is processed, steps shall be put in place to ensure that personal data is kept up to date.
  3. All data is held within a secure IT environment with appropriate multiple levels of system security.


7. Archiving / removal

  1. To ensure that personal data is kept for no longer than necessary, the Charity shall put in place archiving procedures for each area in which personal data is processed and review this process annually.
  2. The archiving procedures shall consider what data should/must be retained, for how long, and why.


8. Security

  1. The Charity shall ensure that personal data is stored securely using modern software that is kept-up-to-date and incorporates appropriate levels of password protection and access authentication.
  2. Access to personal data shall be limited to personnel who need access and appropriate security should be in place to avoid unauthorised sharing of information.
  3. When personal data is deleted this should be done safely such that the data is irrecoverable.
  4. Appropriate back-up and disaster recovery solutions shall be in place.


9. Breach

In the event of a breach of security leading to the accidental or unlawful destruction, loss, alteration, unauthorised disclosure of, or access to, personal data, the Charity shall promptly assess the risk to people’s rights and freedoms and if appropriate report this breach in compliance with GDPR.

This policy has been reviewed and approved by the Board of Trustees of the Charity.