Eurordis Position paper: Achieving Holistic Person-Centred Care to Leave No One Behind

Eurordis has just published a position paper entitled Achieving Holistic Person-Centred Care to Leave No One Behind.

“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.

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.”

In order to accomplish this goal, Eurordis proposes a list of 10 recommendations directed towards the EU, all European countries and all stakeholders (including the European Reference Networks) within the health and social sector.

These recommendations are:

1. Making full use of EU instruments and European networks to implement holistic care for rare diseases

2. Creating a supportive political environment at national level for holistic care for rare diseases

3. Gathering and disseminating knowledge and good practices, to ensure that the needs of people living with a rare disease and their carers are adequately addressed by specialised and mainstream services

4. Implementing specific mechanisms that ensure integrated care provision to rare diseases

5. Guaranteeing meaningful engagement of organisations and representatives of people living with a rare disease in the design and implementation of policies and services

6. Implementing specific measures that ensure access of people living with a rare disease and their carers to adequate social services and social protection

7. Ensuring the recognition and adequate compensation of the disabilities experienced by people living with a rare disease

8. Creating the conditions for people living with a rare disease and their carers to access adapted and sustainable employment

9. Implementing specific mechanisms that empower people living with a rare disease and their carers, in co-creation and co-delivery with organisations representing people living with a rare disease

10. Eliminating all types of discrimination, ensuring that people living with a rare disease have access to social, labour, educational, leisure inclusion on equal footing with other citizens

Read the full paper here

Read the executive
Summary here

The position paper has already been translated into French, German, Spanish, Italian, Portuguese and Russian, which can be found here