Neurodegeneration Initiative Ltd

Website: www.n-di.org.uk
Last updated: 20 June 2026 (registered office update)

1. Who We Are

Neurodegeneration Initiative Ltd (‘NI’, ‘we’, ‘us’, ‘our’) is a company limited by guarantee, registered in England and Wales with number 16213027.

NI is committed to protecting the privacy of everyone who engages with us and to handling personal data responsibly, transparently, and in accordance with the UK General Data Protection Regulation (UK GDPR) and the Data Protection Act 2018.

Registered address: 71-75 Shelton Street, Covent Garden, London, WC2H 9JQ.

For data protection queries, please contact:
Dr Siddhartha Ghose
Head of Operations
siddhartha.ghose@n-di.org.uk

2. What Personal Data We Collect

We collect and process the following categories of personal data:

2.1. Website Enquiries

When you contact us through our website, we collect your name, email address, and any information you choose to include in your message.

2.2. Staff and Volunteers

If you work or volunteer with us, we collect information necessary to manage that relationship. This may include your name, contact details, emergency contact details, qualifications, right to work documentation, and any other information required by employment or volunteering law.

2.3. Academics and Researchers

We engage with academics and researchers working in the field of neurodegenerative diseases, including Alzheimer’s disease, dementia, Parkinson’s disease, and related conditions. For individuals in this category, we may collect your name, institutional affiliation, contact details, areas of research expertise, and relevant publications or professional credentials. This information helps us to build and maintain a network of expertise that supports our mission.

2.4. Consultants and Suppliers

Where individuals provide professional services to NI, including strategic planning, legal & accountancy, scientific expertise and operational consultancy, we collect and process personal data necessary to manage those working relationships. This may include your name, contact details, business address, professional qualifications, and contractual and financial information. Where consultants or suppliers operate through a company or firm, we will generally process the minimum personal data necessary to manage the contract.

Neurodegeneration Initiative Ltd is a company limited by guarantee with number 16213027 and registered office at 71-75 Shelton Street, Covent Garden, London, WC2H 9JQ.
The Neurodegeneration Initiative
Delivering the Objectives of the Dame Barbara Windsor Dementia Goals Programme

2.5. Industry and Foundation Organisation Contacts

We work with staff and representatives from pharmaceutical companies, biotechnology firms, SMEs, and foundation organisations in connection with short- and long-term partnerships. For individuals in this category, we may collect your name, job title, employer, contact details, and information relevant to the partnership or collaboration. This data is used solely to manage and develop those relationships in furtherance of our neurodegeneration research mission.

3. How and Why We Use Your Personal Data

We use your personal data only for the purposes for which it was collected or for compatible purposes. These include:

  • Responding to your enquiries and communicating with you
  • Processing and administering donations and gift aid claims
  • Keeping supporters informed of our work (where you have agreed to this)
  • Managing staff and volunteer relationships, including payroll and statutory obligations
  • Sharing relevant data with research partners and universities where this supports our neurodegeneration research mission
  • Meeting our legal and regulatory obligations

4. Our Legal Basis for Processing

Under UK GDPR, we must have a lawful basis for processing personal data. We rely on the following bases:

  • Legitimate interests – for responding to enquiries and communicating with you about our work, where our interests do not override your rights
  • Contractual necessity – for processing relating to staff and volunteer agreements
  • Legal obligation – where processing is required by law (e.g. employment law, HMRC requirements)
  • Consent – for any marketing communications, where we will ask for your explicit agreement

Where we rely on consent, you have the right to withdraw it at any time by contacting us.

5. Who We Share Your Data With

We do not sell your personal data. We may share it with:

  • Research partners and universities, where this is necessary to advance our work on neurodegeneration and where appropriate safeguards are in place
  • Service providers who process data on our behalf (for example, payment processors), who are bound by data processing agreements
  • Regulatory bodies or law enforcement agencies where we are legally required to do so

Where data is shared with research partners, we ensure that appropriate data sharing agreements or other legal safeguards are in place, and that data is used only for agreed purposes consistent with our mission.

6. Cookies and Website Analytics

Our website uses cookies to help us understand how visitors use it and to improve your experience. A cookie is a small text file placed on your device by your browser. We use:

  • Essential cookies – required for the website to function correctly
  • Analytics cookies – to understand how visitors navigate the site (for example, via Google Analytics). This data is aggregated and anonymous where possible

You can manage or disable cookies through your browser settings. Please note that disabling cookies may affect the functionality of the website. For more detail on managing cookies, visit www.allaboutcookies.org.

Neurodegeneration Initiative Ltd is a company limited by guarantee with number 16213027 and registered office at 71-75 Shelton Street, Covent Garden, London, WC2H 9JQ.
The Neurodegeneration Initiative
Delivering the Objectives of the Dame Barbara Windsor Dementia Goals Programme

7. How Long We Keep Your Data

We retain personal data only for as long as necessary for the purpose it was collected, or as required by law. As a guide:

  • Enquiry and contact data: up to 2 years from last contact, unless an ongoing relationship develops
  • Staff, suppliers and consultants: in accordance with employment law, typically up to 6 years after the end of the relationship
  • Research-related data: in accordance with our research data retention policy and any applicable ethics approvals

8. Your Rights

Under UK GDPR, you have the following rights in relation to your personal data:

  • The right to access – to request a copy of the data we hold about you
  • The right to rectification – to ask us to correct inaccurate or incomplete data
  • The right to erasure – to ask us to delete your data in certain circumstances
  • The right to restrict processing – to ask us to limit how we use your data
  • The right to data portability – to receive your data in a commonly used, machine readable format
  • The right to object – to object to processing based on our legitimate interests
  • Rights relating to automated decision-making – we do not make automated decisions about individuals

To exercise any of these rights, please contact us using the details in Section 1. We will respond within one calendar month.

9. Complaints

If you have concerns about how we handle your personal data, please contact us in the first instance so we can try to resolve the matter. You also have the right to lodge a complaint with the Information Commissioner’s Office (ICO), the UK’s independent data protection regulator:

Information Commissioner’s Office
Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF
Telephone: 0303 123 1113
Website: www.ico.org.uk

10. Changes to This Privacy Statement

We may update this Privacy Statement from time to time. Any changes will be posted on this page with an updated revision date. We encourage you to review this page periodically to stay informed about how we protect your data.