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.

Read the full paper

Read the executive summary

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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