The future of rare diseases: Leaving no one behind!

Although great progress has been made over the last decade to improve the lives of people living with rare diseases, there remains a high level of unmet needs. The Rare 2030 survey aimed to collect rare disease patients’ perspectives on the future of rare diseases to contribute to shaping the Rare 2030 recommendations. The survey shows that a holistic approach to rare diseases is needed, including research, diagnosis, treatment and care, and capitalising on new technological opportunities. Such policies need to be integrated in a new European framework on rare diseases by 2023 to guide National Plans for Rare Diseases and ensure that no one living with a rare disease is left behind.

Read the full report in English here

Key findings from a survey on the opinion of people living with rare diseases on policies that may impact their lives in 10 languages (Europe)

Key findings from a survey on the opinion of people living with rare diseases on policies that may impact their lives in 10 languages (world)

Detailed answers to all questions of the survey in 23 languages

 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases