Privacy Policy

The following privacy policy applies from the 20th May 2018

Fanconi Hope is committed to protecting the privacy of those who register with and others who visit our websites. This privacy policy only covers our own websites; links within this site to external websites are not covered by this policy.

1. General Information

Data Protection Laws define Personal Data as information which directly or indirectly identifies an individual. Examples of Personal Data include name, address, date of birth, photo, video or voice recording, Fanconi Anaemia Complementation Group and Date of Bone Marrow Transplantation.

Fanconi Hope collects and processes Personal Data belonging to patients and family members affected by the inherited genetic condition Fanconi Anaemia.

Fanconi Hope has appointed a Data Protection Officer to ensure its compliance with Data Protection Laws. In addition, The Data Protection Officer, who will act as The Charity’s contact point, can be contacted by post to:

By Post:
Data Protection Officer
Fanconi Hope
PO Box 905
Southsea, Hants

By Email:

By Phone:
0300 330 1410

2. How Does Fanconi Hope Protect Your Personal Data?

In order to protect your privacy, The Charity has implemented stringent Information Security and Personal Data Protection Policies. Employees and Associates who come into contact with your Personal Data have obligations to adhere to our policies, and are regularly trained in security and privacy best practice.

We apply appropriate technical and organisational measures in order to protect data, computing devices and the network from accidental / malicious activities or theft. Where appropriate, we encrypt our data and devices with confidential information securely destroyed when no longer required.

3. What do you do with my personal data?

By submitting your details anywhere on our website, for example by subscribing to one of our newsletters, you understand and agree to your details being entered onto the Fanconi Hope database. Your personal data will be held and used in accordance with the Data Protection Act 1998

It will be used by Fanconi Hope for the purpose of informing you about news, information, events, campaigns and fundraising and for research purposes. Normally we will contact you by email; however, we may also contact you by telephone if you have agreed to this option. All email sent through Fanconi Hope systems will be monitored and checked to ensure our systems operate effectively and securely. All email messages sent through Fanconi Hope systems, to other members of this site may be recorded automatically for security and data integrity purposes. You should be aware that if you use standard email for communication with Fanconi Hope, we cannot guarantee that it remains confidential whilst in transit.

4. Who do you share my data with and why?

If you are a patient with Fanconi Anaemia, your personal data will be shared with the team led out of Central Manchester University Hospitals NHS Foundation Trust running our Fanconi Hope-funded study – Observational study for long term health implications of individuals affected by Fanconi anaemia.

We will not share your personal details with anyone else outside of Fanconi Hope without your permission and your data will not be shared with any third parties for commercial use.

5. How long will you keep my personal data?

Due to the long term nature of the condition we will retain your personal information for as long as it has value or until you notify us that you wish us to cease.

6. What data do you hold about me? (and how do you get it?)

The data we hold about you covers the following areas:

  • Contact Details and context of contact
  • Details of Family members
    • For patients with Fanconi Anaemia this may include, where available:-
      • Complementation Group,
      • Date of Bone Marrow Transplantation.
      • Name of Lead Consultant/Transplanter

We collect information in two ways:

  • Directly from you, such as emails, information filled in within application or registration forms, surveys
  • From open source articles and posts in the media. E.g. internet posts or press articles

7. What rights do I have?

You have the following rights:

  • To be informed about how we use your personal data (the purpose of this Privacy Notice);
  • To update your personal data. You can update or amend your information by contacting the Data Protection Officer;
  • To ask us to delete your personal data;
  • To get a free copy of your personal data. A subset of your data (limited to data that you have provided to us) is available in a machine-readable format if required;
  • To object to the processing of your data and have it restricted;
  • The right to make a complaint to the Information Commissioner ( if you think that any of your rights have been infringed by us.

8. How do I change my contact preferences?

You can opt in and out of communications at any time by contacting the Data Protection Officer at

9. How do you ensure my data is secure?

Fanconi Hope is committed to keeping your data secure. We use a variety of security technologies and procedures to help protect your personal data from unauthorised access, use or disclosure.

10. How can I contact you?

If you would like more information or would like to raise any queries with us in relation to your information, you can contact us by writing to the Data Protection Officer, as detailed in the General Information section above.

11. Changes to this Privacy Notice

We will check this policy from time to time and post any changes here. We may also let you know about these changes by email or media message.

12. Resolving Privacy Issues

We will always try our best to resolve any data privacy issue you may have. You have the right to refer any data privacy issue to the Information Commissioner’s Office at any time.

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