About us

LifeArc (“we”, “our”, “us”) respects your privacy and is committed to protecting your personal data. This privacy policy sets out how LifeArc collects, uses and shares the information that you provide us through our website located at www.raremap.co.uk (our “website”) or through our services.

LifeArc is a charity registered with the Charity Commission for England and Wales under registration number 1015243 and a charity registered in Scotland with the Office of the Scottish Charity Regulator under registration number SC037861. LifeArc is also a company limited by guarantee, with company number 2698321, incorporated under the laws of England and Wales at Lynton House, 7-12 Tavistock Square, London, WC1H 9LT. Our website is not intended for children and we do not knowingly collect data relating to children.

1. Personal data we process

Personal data, or personal information, means any information about a living individual from which that person can be identified. It does not include information which cannot be used to identify an individual (anonymous data).

We may collect, use, store and transfer different kinds of personal data about you which we have grouped together as follows:

• Identity Data includes first name, last name role and organisation
• Contact Data includes email address, employer/academic institution and position, invoice address and telephone number
• Technical Data includes internet protocol (IP) address, browser type and version, time zone setting and location, browser plug-in types and versions, operating system and platform and other technology on the devices you use to access this website
• Account Data includes Identity Data, Contact Data and any other information required to add, amend or remove your organisation from www.raremap.co.uk.
• Feedback Data includes your website feedback
• Usage Data includes information about how you use our website and interact with www.raremap.co.uk.

We do not routinely collect any Special Categories of Personal Data. Under the UK GDPR, special category personal data is information revealing racial or ethnic origin, political opinions, religious or similar beliefs, trade union membership, physical or mental health conditions, sexual life, sexual orientation, biometric or genetic data.

2. How your personal data is collected

We may collect data from and about you through automated technologies or interactions. As you interact with our website, we may automatically collect Technical Data about your equipment, browsing actions and patterns. We collect this personal data by using cookies, server logs and other similar technologies. Please see our Cookie Policy for further details.

3. Why we use your personal data and lawful bases

We will only use personal data when the law allows us to (i.e. where we have a ‘lawful basis’). Most commonly, we will use your personal data in the following circumstances:

• Where it is necessary for our legitimate interests (or those of a third party) and your interests and fundamental rights do not override those interests. For example, we have a legitimate interest in enhancing the user experience of our website.
• Where it is necessary to comply with a legal obligation on us (for example, reporting to the UK’s Companies House).
• Less commonly, we may ask for your consent to use your personal data for a specific purpose.

You may request to withdraw your consent or request for us to remove your personal data at any time by contacting us at contact@raremap.co.uk.

Note that we may process your personal data relying on more than one lawful basis depending on the specific purpose for which we are using your data.

Please contact us contact@raremap.co.uk if you need details about the specific legal basis we are relying on to process your personal data.

Change of purpose

We will only use your personal data for the purposes for which we collected it, unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose. If you would like an explanation as to how the processing for the new purpose is compatible with the original purpose, please contact us contact@raremap.co.uk.

If we need to use your personal data for an unrelated purpose, we will notify you and we will explain the legal basis which allows us to do so.

4. Sharing your personal data

We may share your personal data with external third parties including:

• Rare Disease Research UK, our other partners, as well as third party services providers, including those who provide data processing services to us (for example, our website spam security service);
• Any competent law enforcement body, regulator, government agency, court or other third party where we believe disclosure is necessary: (i) as a matter of applicable law or regulation, (ii) to exercise, establish or defend our legal rights, or (iii) to protect your vital interests or those of any other person;
• Another charity or organisation, as part of a merger or other transfer of all or part of our charitable assets;
• Professional advisers, co-funders and other research bodies; and
• Another person, where you have consented to the disclosure.

We require all third parties to respect the security of your personal data and to treat it in accordance with the law.

Third-party marketing

We will not share your personal data with any company outside the LifeArc Group for marketing purposes, unless you specifically request that we do so.

5. International transfers

We do not transfer your personal data outside the UK.

6. Data Security

We have put in place appropriate technical and organisational security measures to prevent your personal data from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. In addition, we limit access to your personal data to those employees, agents, contractors and other third parties who have a business need to know.

We have put in place procedures to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so.

7. Data retention

We will only retain 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.

When we have no ongoing need to process personal data, it will either be deleted or anonymised or, if this is not possible (for example, because the relevant personal data has been stored in backup archives), we will store it securely and isolate it.

In some circumstances you can ask us to delete your personal data: see Section 8 – Your Legal Rights below for further information.

8. Your legal rights

Under certain circumstances, by law you have the right to:

• Request access to your personal data (commonly known as a ‘data subject access request’), to receive a copy of the personal data we hold about you and to check it is being lawfully processed
• Request correction of the personal data that we hold about you
• Object to processing of your personal data. You also have the right to object where we are processing your personal data for direct marketing purposes (see also Section 4 above)
• Request erasure of your personal data where there is no good reason for us to continue to process it, or where you have exercised the right to object to processing
• Request the restriction of processing of your personal data, for example if you want LifeArc to suspend processing of certain data to establish its accuracy or the reason for processing it
• Request the transfer of your personal data to another party

If you wish to exercise any of the rights set out above, please contact us contact@raremap.co.uk

Right to complain

LifeArc works to high standards when it comes to processing your personal information. If you have queries or concerns about our handing of your personal information, we would appreciate the chance to deal with your concerns before you approach the Information Commissioner Office’s (ICO), so please contact us in the first instance contact@raremap.co.uk. If you remain dissatisfied, you have the right to make a complaint at any time to the ICO, the UK supervisory authority for data protection issues (www.ico.org.uk).

9. Cookies

For information about the cookies we use, please see our Cookie Policy www.raremap.co.uk/cookies.

10. Links to other websites

This website may include links to third-party websites, plug-ins and applications. Clicking on those links or enabling those connections may allow third parties to collect or share data about you. We do not control these third-party websites and are not responsible for their privacy statements.

11. Contact us

We have appointed a Data Protection Officer who is responsible for overseeing questions in relation to this privacy policy. If you have any questions about this privacy policy, including any requests to exercise your legal rights, please contact the Data Protection Officer using the details set out below.

Contact Details

Full name of legal entity: LifeArc

Title of Data Protection Officer: Data Governance Lead

Email us via this link: dataprivacy@lifearc.org

Postal address: LifeArc, Lynton House, 7-12 Tavistock Square, London, WC1H 9LT

ICO registration number: Z6907935

Telephone number: +44 (0)20 8713 1558

12. Changes to this policy

If we decide to make significant changes to our Privacy Policy, we aim to notify you of these changes by way of a notice on the website. This version of our Privacy Policy was updated on 15 July 2026.