Rare Disease Research Funding

Protect research funding and trial access for the 30 million people living with a rare disease.

Roughly one in ten people lives with a rare disease, and about ninety-five per cent of those conditions have no approved treatment. This cause asks Congress to protect the research programmes that carry early-stage work through the funding gap, keep the orphan drug incentives intact, and require trial-site geography that does not exclude patients who cannot travel.