Who we are

Rare Disease Connect is a rare disease patient recruitment and community platform. We connect patients and caregivers living with rare diseases with information, community resources, and research opportunities.

For the purposes of this policy, Rare Disease Connect is the data controller for personal information collected through our newsletter and research-contact signup forms.

What we collect

When you sign up to one of our condition-specific newsletters, or ask to be contacted about research opportunities, we collect your name and email address. We do not collect any health or medical information at this stage.

You may sign up for the newsletter, the research-contact list, or both — these are separate, independent choices, and choosing one does not sign you up for the other.

Why we collect it

Newsletter If you tick the newsletter checkbox, we use your name and email address to send you the newsletter you signed up for. This may include condition-specific news and updates about research and study opportunities relevant to the disease area you selected. The newsletter does not involve us reaching out to you individually about a specific study — for that, see “Research contact” below.

Research contact If you tick the research-contact checkbox, we use your name and email address to contact you about research and study opportunities relevant to your condition, including those run by or on behalf of approved research partners. RDC always contacts you directly ourselves — we do not share your details with a research partner unless you separately agree to that at the time we discuss a specific opportunity with you. If you’re interested in a specific study, we’ll ask for your clear, explicit consent before passing any of your details to the partner running it.

We will only contact you for the purpose(s) you signed up for. We will not use your details for any other purpose without asking you first.

Our lawful basis for processing your data is your consent (Article 6(1)(a) UK/EU GDPR), which you provide when you tick the relevant consent box on our signup form. You can withdraw this consent at any time — see “Your rights” below.

Where your data is processed

We use Brevo, an email and contact management platform headquartered in France, to send our newsletters and manage research-contact communications. Brevo processes and stores this data on servers located within the European Union. Your data does not leave the UK/EEA as part of this processing.

If this changes — for example, if we begin working with a service provider based outside the UK/EEA — we will update this policy and put appropriate safeguards in place, such as Standard Contractual Clauses, as required by law.

How we store your data

Your data is stored securely and is never sold to third parties. We use Brevo to manage and send our communications; Brevo is contractually required to handle your data securely and in accordance with applicable data protection law.

Details you provide when discussing a specific research opportunity with us (beyond name and email) are stored separately from your Brevo contact record and are only used for that conversation.

How long we keep it

Newsletter: we keep your details for as long as you remain subscribed. If you unsubscribe or ask us to delete your data, we will do so within 30 days.

Research contact: we keep your details for as long as you remain on the research-contact list. If you ask to be removed, we will do so within 30 days.

Your rights

You have the right to access, correct, or delete your personal data at any time. You can:

• Unsubscribe from the newsletter at any time using the link at the bottom of any email we send you
• Ask to be removed from the research-contact list at any time by contacting us directly
• Contact us at privacy@rarediseaseconnect.com with any request

You also have the right to lodge a complaint with your local data protection authority if you have concerns about how we handle your data.

Changes to this policy

This policy will be updated when our full site and research participation service launches. We will notify active subscribers and research contacts of any significant changes.

Contact us

If you have any questions about this policy or how we handle your data, please get in touch.