Privacy Notice – Haemophilia NI
Haemophilia NI is a registered charity in NI dedicated to supporting individuals affected by bleeding disorders. We are committed to protecting your personal data and respecting your privacy.
This notice applies to members, supporters, donors, fundraisers, volunteers, event participants, healthcare professionals and website users.
Who we are
Haemophilia NI is the data controller for the personal data we process. If you have any questions about this Privacy Notice or how we use your data, please contact:
Data Protection Lead - Haemophilia NI
51A Mullaghboy Road, Mullaghboy
Larne, BT40 3TR
Email: info@haemophiliani.org
What information we collect - Depending on how you interact with us, we may collect:
· Name, address, email address and phone number
· Date of birth and gender
· Information about your bleeding disorder, treatment or relationship to someone with a bleeding disorder (optional)
· Family connections between members, if stated on registration
· Donation, payment and Gift Aid information
· Records of communications with us
· Event attendance and service usage
· Technical data such as IP address, browser type and website usage
We only collect sensitive personal data (such as health information) where necessary and with your consent.
How we collect your data - We collect personal data when:
· You join as a member
· You sign up to an event or service
· You make a donation or Gift Aid declaration
· You fundraise for us
· You volunteer with us
· You contact us
· You use our website (including via cookies)
Legal basis for processing - We process personal data under the following legal bases:
· Consent: Where you have actively agreed to receive communications or provide sensitive information.
· Legal obligation: Where we are required to process data to comply with the law (for example, financial records and Gift Aid).
· Legitimate interests: Where processing is necessary for running the charity, providing services, communicating with members and stakeholders, and improving our work, provided this does not override your rights.
Sharing Your Data
We do not sell your data. We may share it with trusted partners only when necessary and under strict agreements.
Data Security.
We take appropriate technical and organisational measures to protect your data, including:
· Secure systems and encrypted data
· Restricted staff access
· HTTPS website security
Retention. We keep your data only as long as necessary for its purpose.
· Membership records: 6 years after last activity
· Financial records: 6 years (HMRC requirement)
· Health-related data: review annually; delete when no longer needed
· Deletion process: Secure erasure for electronic data, shredding for paper data
Your rights. You have the right to:
· Access your personal data
· Correct inaccurate data
· Withdraw consent
· Object to processing based on legitimate interests
· Request deletion where applicable
· Restrict processing
To exercise your rights, contact our Data Protection Lead.
Complaints. If you are unhappy with how we handle your data, you can contact the Information Commissioner’s Office (ICO) at https://www.ico.org.uk.