Position paper: Achieving Holistic Person-Centred Care to Leave No One Behind

A contribution to improve the everyday lives of people living with a rare disease and their families

A position paper by EURORDIS and its members

May 2019

Today, the 30 million Europeans living with a rare disease and their family members (often the main carers) remain a marginalised and largely invisible population, with little information about their diseases and their rights, few treatments, and a high level of psychological, social and economic vulnerability.

This paper presents evidence on the unmet everyday needs of people living with a rare disease and their family members (often the main carers), while also offering a synthesis on policy and recommendations to achieve holistic care for rare diseases.

Over the years, EURORDIS and its members have been taking part in discussions with all stakeholders to shape holistic care solutions. Our wish is to continue being part of the solution.

The ambition of EURORDIS is to have holistic care provided to the 30 million people living with a rare disease in Europe, and their families, by 2030. Our ambition is to see people living with a rare disease integrated in a society that indeed leaves no one behind.

With the proposals presented in this paper, we intend to support European countries in implementing the National Plans for rare diseases, the European Pillar of Social Rights, the United Nations Convention on the Rights of Persons with Disabilities and the Sustainable Development Goals set by the United Nations.

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Read the executive summary

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La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases