Eurordis - Rare Disease Europe

EURORDIS calls for holistic care for the 30m people living with a rare disease in Europe by 2030

At today’s EURORDIS Membership Meeting 2019, EURORDIS and its over 800 member organisations are launching a new position calling for the provision of holistic care for the 30 million Europeans living with a rare disease and their families by 2030.

Over 200 representatives of people living with a rare disease are together today in Bucharest to discuss next steps to implement the position across Europe.

The full 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’ and translations in French, German, Italian, Portuguese, Russian, Spanish are available via eurordis.org/carepaper.

Dorica Dan, Member of the EURORDIS Board and President of the Romanian National Alliance for Rare Diseases, said “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.”

Raquel Castro, EURORDIS Social Policy Director, commented, “This position has been developed with our members and is based on the everyday experiences of people living with a rare disease and their families. Our ambition is to have holistic care provided to all by 2030. With this position paper we aim to inspire a process that ensures people living with a rare disease have access to such care.”

Ms Castro continued, “All stakeholders have an instrumental role to play in implementing the recommendations we set out. The time to act is now, particularly when the Sustainable Development Goals are calling for effective global action to ensure that no one is left behind, and while the European Pillar of Social Rights is paving the way for more effective rights equal opportunities and social inclusion in the EU countries.”

Making holistic care a reality – new recommendations

The strategy to ensure holistic and integrated care for rare diseases is structured around three pillars that are explored in detail within the position:

• Pillar 1: Quality and adequate social services and policies

• Pillar 2: Integrated care: bridging health and social care

• Pillar 3: Equity of rights and opportunities

EURORDIS and its members are calling upon the EU, all European countries and all stakeholders within the health and social sector, to disseminate the new position and to take action based on its ten recommendations.

What is holistic care?

Holistic care covers the 360° spectrum of the health, social and everyday needs of people living with a rare disease and their families. EURORDIS’ ambition is to see people living with a rare disease and their families integrated in a society that provides holistic care, by:

• Being aware of their needs and effectively providing timely, high-quality care according to these needs;
• Breaking down barriers in access to care, treatment, education, employment, leisure, psychological support and all aspects of social inclusion;
• Enabling them to fully enjoy their fundamental human rights, on equal footing with other citizens.

Read the paper at eurordis.org/carepaper.

Eva Bearryman, Communications Manager, EURORDIS-Rare Diseases Europe