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New recommendations to improve social care for rare diseases

April 2016

Social care for rare diseases

The European Commission Expert Group on Rare Diseases has recently adopted new recommendations on how to support the incorporation of rare diseases into mainstream social services and policies.

These recommendations aim at advising EU Member States and the European Commission on issues that should be considered when organising holistic care for people living with a rare disease within national health and social care systems.  They highlight several measures that facilitate multidisciplinary, continuous, person-centred and participative care provision.

These recommendations will be a key tool for EURORDIS member organisations to advocate for better social care for people living with a rare disease and for the incorporation of social policy measures into national rare disease plans.

The role of EURORDIS

Over the last four years, EURORDIS volunteers, member organisations and staff have worked on the development of these recommendations with the support of the EURORDIS Council of National Alliances, Policy Action Group, Social Policy Advisory Group and also through the European joint actions on rare diseases (both previous and current).

EURORDIS also coordinated the involvement of social services and social workers in the drafting process of the recommendations, which in turn contributed to increased awareness of rare diseases amongst social services providers.

New project in line with recommendations

EURORDIS is a partner in the new EU-funded INNOVCare project, which is a first step in applying these recommendations.

INNOVCare addresses the social challenges faced by people living with a rare disease and gaps in the coordination between medical, social and support services in EU Member States.

The project is developing and testing a holistic, personalised care pathway, which involves linking health services with the social and support services that rare disease patients and their families use on a daily basis, ensuring the transfer of information and expertise between service providers.

Participate in survey to help improve care

INNOVCare will start by collecting data on the unmet social needs of people living with a rare disease through a survey carried out under the new EURORDIS Rare Barometer Programme. This data will then inform the project’s care pathway model, which will be implemented in a pilot in Romania.

Rare disease patients, family members and patient representatives can register to take part in this and other surveys by registering for Rare Barometer Voices or participate in a webinar to learn how to get involved in Rare Barometer Voices on Friday 22 April (register for the webinar here).


Please email Raquel Castro, Social Policy and Initiatives Director, with any questions regarding the recommendations or INNOVCare:

Eva Bearryman, Junior Communications Manager, EURORDIS