Equity for rare: Delivering fairer healthcare systems for people with rare conditions
Genetic Alliance UK’s Rare Disease Day policy report presents the findings from their community consultation into what healthcare equity means for people living with rare conditions. They found that people with rare conditions experience profound healthcare inequity because healthcare systems are simply not designed with them in mind.
The report explains that healthcare systems often treat rare conditions as a low priority. Equitable care is further limited by a lack of evidence and low levels of clinical familiarity. These systemic challenges frequently intersect with ethnicity, gender, and socioeconomic status, deepening existing inequities in healthcare.
To read the report: Equity for Rare RDD 2026 report
