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.
Downloads
- Full Report in English (English)
- Key Survey Findings (Europe) in Czech (Czech)
- Key Survey Findings (Europe) in German (German)
- Key Survey Findings (Europe) in English (English)
- Key Survey Findings (Europe) in Spanish (Spanish)
- Key Survey Findings (Europe) in French (French)
- Key Survey Findings (Europe) in Italian (Italian)
- Key Survey Findings (Europe) in Norwegian (Bulgarian)
- Key Survey Findings (Europe) in Russian (Russian)
- Key Survey Findings (Europe) in Swedish (Swedish)
- Key Survey Findings (Europe) in Portuguese (Portuguese)
- Key Survey Findings (World) in Czech (Czech)
- Key Survey Findings (World) in German (German)
- Key Survey Findings (World) in English (English)
- Key Survey Findings (World) in Spanish (Spanish)
- Key Survey Findings (World) in French (Finnish)
- Key Survey Findings (World) in Italian (Italian)
- Key Survey Findings (World) in Norwegian (Bulgarian)
- Key Survey Findings (World) in Russian (Russian)
- Key Survey Findings (World) in Swedish (Swedish)
- Key Survey Findings (World) in Portuguese (Portuguese)
- Detailed survey answers in Bulgarian (Bulgarian)
- Detailed survey answers in Czech (Czech)
- Detailed survey answers in Danish (Danish)
- Detailed survey answers in English (English)
- Detailed survey answers in Spanish (Spanish)
- Detailed survey answers in Finnish (Finnish)
- Detailed survey answers in French (French)
- Detailed survey answers in Greek (Greek)
- Detailed survey answers in Croatian (Croatian)
- Detailed survey answers in Hungarian (Hungarian)
- Detailed survey answers in Italian (Italian)
- Detailed survey answers in Lithuanian (Lithuanian)
- Detailed survey answers in Latvian (Latvian)
- Detailed survey answers in Dutch (Dutch)
- Detailed survey answers in Norwegian (Bulgarian)
- Detailed survey answers in Polish (Polish)
- Detailed survey answers in Portuguese (Portuguese)
- Detailed survey answers in Romanian (Romanian)
- Detailed survey answers in Russian (Russian)
- Detailed survey answers in Swedish (Swedish)
- Detailed survey answers in Slovakian (Slovak)
- Detailed survey answers in Slovenian (Slovenian)