At Niemann-Pick UK (NPUK), we are committed to safeguarding your privacy and personal data in accordance with all applicable laws, including UK and EU data protection regulations. This Privacy Policy outlines how we collect, use, store, and protect your personal information, ensuring transparency and compliance with our legal obligations.
NPUK is registered as a data controller with the Information Commissioner’s Office (ICO), the UK’s independent authority for upholding information rights. Our registration ensures that we process personal information responsibly and lawfully.
This policy may be updated periodically to reflect changes in legislation or best practices advised by the ICO. We will notify you of any changes via our website, social media, post, or email, based on your communication preferences. This Privacy Policy was last updated on 19th June 2025.
If you have any questions, please contact our Central Office Team at info@npuk.org or by telephone at 0191 415 0693.
Niemann-Pick UK (NPUK) is a charitable organisation dedicated to supporting individuals and families affected by Niemann-Pick diseases. Our mission is to raise awareness, provide practical and emotional support, offer advice and information, and facilitate research into potential therapies.
We aim to empower patients and their families, ensuring access to the best possible care, support, and information tailored to their needs. Our work spans three key areas: Care and Support, Information, and Research. To deliver these services, we collect and process personal information, always striving to handle it lawfully and with respect for your privacy.
You can update your communication preferences at any time by emailing info@npuk.org or calling 0191 415 0693.
The personal information we collect depends on our relationship with you and the context in which it is provided. We may collect:
Basic details: Name, address, telephone number.
Identity verification: Date of birth or passport details (e.g., for employment or DBS checks).
Contact information: Email address, mobile phone number.
Support-related data: Information about your query or the support you seek.
Family details: Information about your spouse/partner, dependants, or other family members, where relevant.
Health and sensitive data: Health, gender, genetic, or other special category information to provide tailored support.
Financial details: Bank or donation details for processing donations or payments.
When you provide third-party data (e.g., family members’ details), you must have the authority to share it and ensure it complies with data protection laws.
We only collect sensitive information (e.g., health or ethnic origins) when necessary to deliver relevant services. We will clearly explain what data we are collecting and why before processing it.
When providing services to families, we may process children’s personal data. This is always done with the consent of a parent or legal guardian, and we will explain how and why the data is used.
We may collect your information directly when you:
Register for events, such as our Annual Family Conference.
Contact us about our services or activities.
Seek support from our team.
Make a donation or organise a fundraising event for NPUK.
Meet us in person, e.g., at an event or clinic day.
Correspond with us regarding a query.
We may also receive information indirectly, such as:
Through third parties with your permission, e.g., fundraising platforms like JustGiving or Virgin Money Giving.
From family members or friends acting on your behalf.
From fundraisers who share your details with us.
From publicly available sources, e.g., Companies House or media articles.
Via our IT systems, including website analytics or social media platforms (see Section 6 for details on cookies).
We only use your personal information when we have a lawful basis, such as:
To comply with legal or regulatory obligations.
For our legitimate interests (e.g., informing you about new services or research with minimal privacy impact).
To perform services you have requested.
With your explicit consent.
We store contact details and relevant data to deliver support services to individuals, families, and professionals. This data is used solely for the agreed purpose and retained for up to two years after the service ends.
Our helpline records only the data needed to address your enquiry. This information is not shared or used for other purposes without your consent and is retained for up to one year.
With your consent, we may use your story or experiences in our materials to raise awareness or advocate for better care. We store this data for three years and seek renewed approval for each use.
Images or videos provided by supporters are stored securely and used only with your permission for campaigns or social media. They are retained for three years unless you request otherwise.
For volunteers, we collect details such as contact information, emergency contacts, and diversity data to manage volunteering opportunities and ensure safety. This data is retained for two years after volunteering ends.
For supporters (e.g., donors or event participants), we collect contact and donation details to thank you, provide updates, and comply with financial reporting requirements. Donation data is kept for seven years; other supporter data is retained for three years.
We collect contact details and preferences from professionals (e.g., healthcare or education staff) to provide relevant services. This data is used only for the agreed purpose and retained for two years after the service ends.
We may use your information to:
Deliver requested services or information.
Understand your needs to personalise our support.
Maintain records for administrative purposes (e.g., accounting).
Respond to complaints or legal claims.
Claim Gift Aid on donations.
Conduct research or statistical analysis to improve our services.
Inform you about campaigns, events, or research updates.
Verify identity for employment or DBS checks.
Comply with legal or regulatory obligations.
We do not share your information with third parties unless:
You provide explicit consent.
It is required by law (e.g., sharing donation details with HMRC for Gift Aid).
It is anonymised for research or statistical purposes.
It is shared with trusted service providers (e.g., JustGiving, MailChimp, or Lamplight) under strict data-sharing agreements.
Our staff are bound by confidentiality obligations, and any third-party providers are vetted to ensure they protect your data. IT service providers may access your information only to provide technical support.
We store your information securely using physical, electronic, and managerial safeguards to prevent unauthorised access. Your data may be held at our Central Office or securely processed by our staff or service providers (e.g., Lamplight). While we take all reasonable precautions, no internet transmission is completely secure, and you share data at your own risk.
In the unlikely event of a data breach, we will notify you and the ICO as required by law. For more information, request our Data Security Statement by contacting info@npuk.org.
You have the following rights regarding your personal information:
Access: Request a copy of the data we hold about you.
Correction: Ask us to correct inaccurate data.
Deletion or Restriction: Request removal or restricted use of your data (note: this may affect our ability to provide services).
Preferences: Update how we contact you or unsubscribe from communications at any time.
To exercise your rights, contact us at:
Phone: 0191 415 0693
Email: info@npuk.org
Post: NPUK, Suite 2 Vermont House, Washington, NE37 2SQ
We aim to respond within one month. For more details on your rights, visit the ICO website at www.ico.org.uk.
We retain your personal information only for as long as necessary to fulfil its purpose or meet legal requirements. After this period, we delete or anonymise it. Anonymised data may be used indefinitely for research without further notice.
Our website uses cookies to enhance your experience and analyse usage. Cookies are small files that, with your consent, are stored on your device to track website activity.
We use Google Analytics permanent cookies to understand which website areas are popular, helping us improve our content and performance. This data is anonymised and not linked to your identity. Google stores this information in accordance with its privacy policy (www.google.com/privacypolicy.html).
Cookies remain on your device until deleted or until they reach their expiry date. You can accept or decline cookies when you first visit our site, and most browsers allow you to disable cookies, though this may limit website functionality.
Our website may link to external sites not controlled by us. We are not responsible for their privacy practices, so please review their policies before sharing data.
If you have concerns about our data handling, follow our Complaints Policy at www.npuk.org. If unresolved, you can contact the ICO at www.ico.org.uk.
For any questions or to exercise your rights, contact:
We are dedicated to protecting your privacy and welcome your feedback.