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 voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases