Rare diseases
Finding rare diseases sooner
A rare disease can take years to name. We fund the practical work that shortens that wait, from better tests to clearer referral routes.
Around 3.5 million people in the UK live with a rare condition. Individually these conditions are uncommon; together they are not. Yet because each one affects small numbers, the tests and treatments that would help are rarely commercially attractive to develop.
The result is what families call the diagnostic odyssey: years of appointments, repeated tests and no name for what is happening. A diagnosis does not always change the treatment, but it almost always changes the experience — it ends the uncertainty, opens the door to support, and connects families to others in the same position.
Duet backs the unglamorous work that shortens that wait. Validating a test so it can be used outside a specialist centre. Funding the pilot data a larger funder will later ask for. Paying for a clear leaflet that answers the questions parents actually have.
What we look for
- Simpler, quicker diagnostic tests that can be used outside specialist centres
- Studies small enough to be passed over by commercial funders, but big enough to change care
- Plain-English information for families waiting for answers
Working on something like this?
If you are a researcher, clinician or patient organisation with a project that keeps missing out on funding, send us a page about it. We reply to everyone.
Get in touchOur first rare disease grant
Duet's first funding round included a pilot of a simplified diagnostic test for a group of rare metabolic conditions, designed to run in a district hospital rather than only in specialist centres. If it works, it removes a referral step and weeks of waiting.
Read our newsSmall charity, practical help
Duet is funded by our founders and by people who believe useful research should not stall for want of a modest amount of money. Every gift goes into projects.