EURORDIS, the European rare diseases group published a position paper on holistic care for patients and their families. This paper shows the unmet everyday needs of people living with a rare disease and their family members (often the main carers). It also offers a synthesis on policy and recommendations to achieve holistic care for rare diseases.
30 million Europeans living with a rare disease and their family members (often the main carers) remain a marginalised and largely invisible population. There is not enough information about their diseases and their rights and too few treatments. They are subject to a high level of psychological, social and economic vulnerability.
Over the years, EURORDIS and its members have been taking part in discussions with all stakeholders to shape holistic care solutions. 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. People living with a rare disease should be integrated in a society that indeed leaves no one behind.
With the proposals presented in this paper, the group wants 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. In particular it wants making EU funds available under the Multiannual Financial Framework — in particular cohesion funding — to set up networks and projects that help countries deliver long-term care; and supporting Centres of Expertise and European Reference Networks, which are meant to connect rare disease patients with experts around the Continent.
EURORDIS is also urging policymakers to provide adequate and sustainable funding at a national and EU level to guarantee that essential policies, services, structures and networks are effectively implemented and sustainable.