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

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.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 Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases