Last Updated: 16 August 2025
1. Our Commitment to Your Privacy
The Bruck Syndrome Foundation ("we", "us", "our") is committed to protecting and respecting your privacy. As a charity, we handle personal and sensitive information, and we take our responsibility to protect it very seriously.
This policy explains what personal data we collect, why we collect it, how we use and store it, and what your rights are. For the purpose of the UK General Data Protection Regulation (UK GDPR), the Data Controller is the Bruck Syndrome Foundation.
2. What Information We Collect
We may collect and process the following types of information about you:
Identity and Contact Data: Including your name, email address, postal address, and telephone number. We collect this when you make a donation, sign up for our newsletter, or contact us.
Financial Data: Including bank account or payment card details when you make a donation. These are processed securely by our third-party payment processors and are not stored by us.
Website Usage Data: Information about how you use our website, collected through cookies and analytics tools.
Special Category (Sensitive) Data: This is more sensitive information and requires a higher level of protection. We only collect this data when there is a clear reason for doing so. This includes:
Health Information: We will collect information about your or your family member's health if you apply for a grant or join our support services. We do this to assess eligibility and provide the best possible support. We will always ask for your explicit consent before collecting this type of data.
3. How and Why We Use Your Information (Our Lawful Basis)
We must have a valid legal reason (a "lawful basis") to use your personal data. We will only use your data for the purpose it was collected for.
To Provide Our Services (e.g., Grants and Support):
Why? To process applications, assess eligibility, and provide a safe online support community.
Lawful Basis: We will ask for your Explicit Consent to process your personal and sensitive health data for these purposes.
To Process Donations:
Why? To process your donation, claim Gift Aid (if applicable), and keep a record of our supporters.
Lawful Basis: Legitimate Interest to manage our charity's finances and Legal Obligation to comply with HMRC rules for Gift Aid.
To Keep You Informed (e.g., Newsletters):
Why? To send you updates about our work, fundraising appeals, and events.
Lawful Basis: We will only send you marketing communications if you have given us your Consent. You can withdraw your consent at any time.
To Improve Our Website:
Why? To understand how our website is used so we can improve the user experience.
Lawful Basis: Legitimate Interest to ensure our website is effective and user-friendly.
4. Data Security and Storage
We have put in place robust security measures to prevent your personal data from being accidentally lost, used, or accessed in an unauthorised way.
We will only keep your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements. For example, we are required by law to keep financial records of donations for six years. Information related to grant applications will be kept securely for a defined period and then securely destroyed.
5. Sharing Your Information
We will never sell or trade your personal information.
We may share your data with trusted third-party service providers who help us operate, such as:
Payment processors to handle donations securely.
HMRC to process Gift Aid claims.
IT service providers who host our website and store our data securely.
We require all third parties to respect the security of your personal data and to treat it in accordance with the law.
6. 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 correct information you think is inaccurate.
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 information in certain circumstances.
Your right to object to processing - You have the right to object to the processing of your personal data in certain circumstances.
Your right to data portability - You have the right to ask that we transfer the information you gave us to another organisation, or to you, in certain circumstances.
To exercise any of these rights, please contact us at info@brucksyndrome.org
You also have the right to lodge a complaint with the UK's data protection regulator, the Information Commissioner's Office (ICO), if you are unhappy with how we have handled your data.
7. Cookies
Our website uses cookies to enhance user experience and analyse site usage. A cookie is a small file placed on your computer's hard drive. You can choose to accept or decline cookies through your browser settings.
8. Changes to This Policy
We may update this policy from time to time. Any changes will be posted on this page, so please check back periodically.
9. Contact Us
If you have any questions about this Data Privacy Policy or how we handle your information, please contact our Data Protection Lead at: info@brucksyndrome.org