In-depth analysis of the results of the European Parliament’s public consultation on rare diseases

https://www.europarl.europa.eu/RegData/etudes/STUD/2025/778583/ECTI_STU(2025)778583_EN.pdf European Parliament Last week, the European Parliament SANT Committee published the report from its consultation on rare diseases, launched earlier this year. The report's findings underline the urgent need for an EU Rare Diseases Action Plan: among 2,679 respondents living with or caring for someone with a rare disease, nearly half reported having no available treatment, almost 30% reported diagnostic delays of more than five years. Health professionals, meanwhile, cited lack of funding as the biggest barrier to better research and care.