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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Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases