Privacy Policy
This privacy notice tells you what to expect us to do with your personal information when you volunteer with us, contact us or subscribe to our mailing lists.
What information we collect and use, and why
The Rare Disease Research UK Platform was launched in July 2023 following a £14 million investment from the Medical Research Council (MRC) and the National Institute for Health and Care Research (NIHR). We aim to foster greater collaboration between academic, clinical and industry researchers, patients, research charities and other key organisations in rare disease research to accelerate the understanding, diagnosis and treatment of rare diseases. Therefore, we collect or use the following personal information for the purpose of carrying out Rare Disease Research UK’s projects and activities.
- Contact details, e.g. name, address, telephone number or personal email address.
Lawful bases and data protection rights
Under UK data protection law, we must have a “lawful basis” for collecting and using your personal information. There is a list of possible lawful bases in the UK GDPR. You can find out more about lawful bases on the ICO’s website.
Which lawful basis we rely on may affect your data protection rights which are in brief set out below. You can find out more about your data protection rights and the exemptions which may apply on the ICO’s website:
- Your right of access
You have the right to ask us for copies of your personal information. You can request other information such as details about where we get personal information from and who we share personal information with. There are some exemptions which means you may not receive all the information you ask for. Read more..
- Your right to rectification
You have the right to ask us to correct or delete personal information you think is inaccurate or incomplete. Read more..
- Your right to erasure
You have the right to ask us to delete your personal information. Read more..
- Your right to restriction of processing
You have the right to ask us to limit how we can use your personal information. Read more..
- Your right to object to processing
You have the right to object to the processing of your personal data. Read more..
- Your right to data portability
You have the right to ask that we transfer the personal information you gave us to another organisation, or to you. Read more..
- Your right to withdraw consent
When we use consent as our lawful basis you have the right to withdraw your consent at any time. Read more..
If you make a request, we must respond to you without undue delay and in any event within one month.
To make a data protection rights request, please contact us using the contact details at the top of this privacy notice.
Our lawful bases for the collection and use of your data
Our lawful bases for collecting or using personal information is:
- Consent – we have permission from you after we gave you all the relevant information. All of your data protection rights may apply, except the right to object. To be clear, you do have the right to withdraw your consent at any time.
Where we get personal information from
We collect your information from the following places:
- Directly from you when you volunteer with us, contact us, subscribe to one of our mailing lists or register for one of our events.
- From time to time we may also receive personal contact information from external referees.
How long we keep information
We will keep personal information that you give to us for as long as it is required for the purposes it was processed and not beyond the lifetime of the Rare Disease Research UK platform.
Should you inform us that you would no longer like us to keep your personal information, we will remove you from all of our databases and delete any information we hold about you.
How to complain
If you have any concerns about our use of your personal data, you can make a complaint to us using the contact details at the top of this privacy notice.
If you remain unhappy with how we’ve used your data after raising a complaint with us, you can also complain to the ICO.
The ICO’s address:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Helpline number: 0303 123 1113
Last Updated: February 2025
