New Project: Filling the Gaps in Social Care for Rare Diseases

New project: filling the gaps in social care for people living with a rare disease

EURORDIS will be the voice of people living with a rare disease across Europe in the new INNOVCare project.

INNOVCare (Innovative Patient-Centred Approach for Social Care Provision to Complex Conditions) addresses the social challenges faced by people living with a rare disease and gaps in the coordination between medical, social and support services in Member States in the European Union (EU).

This new EU-funded project is developing and testing a holistic, personalised care pathway that aims to strengthen partnerships between care providers - public, private and civil society organisations.

The innovative care pathway involves linking health services with the social and support services that people with a rare disease and their families use on a daily basis (school, transport, leisure services etc.), ensuring the transfer of information and expertise between service providers. The pathway also centralises the coordination of care through a resource centre for rare diseases and regional case managers, in an effort to relieve the burden of care management for patients and families.

INNOVCare will start by collecting data on the unmet social needs of people living with a rare disease, as well as on existing care models in a selection of EU Member States. This data will then inform a proposal for an innovative care pathway model. The model will be implemented in a pilot in Romania and its socio-economic impact and cost-benefit assessed by expert teams. This optimised care model is expected to also result in efficiency gains for national authorities.

INNOVCare will therefore give voice to the social needs of people living with a rare disease and support the EU and Member States in implementing necessary structural reforms of social care systems.

The project stems from work carried out under the EUCERD (EU Committee of Experts on Rare Diseases) Joint Action on rare diseases, which focused on mapping specialised social services across Europe and on identifying key issues to support the integration of rare diseases into mainstream social policies and services.


In addition to representing the voice of people living with a rare disease and their families, EURORDIS' role in INNOVCare focuses on:

  • Internal and external project communication, ensuring the link to the rare disease community and to the various stakeholders involved in care provision;

  • Collecting data on unmet social needs of people living with a rare disease and their families in the EU and analysing existing social care pathways in a selection of Member States;

  • Facilitating the creation of a European network of resource centres to ensure exchange of good practices.

Social challenges faced by rare disease patients

Rare diseases often do not have a satisfactory treatment or any treatment at all. As a result, the need for integrated care provision is crucial to alleviate the impact that a rare disease has on the daily life of the patient and their family.

Social and daily challenges faced by people living with a rare disease and their families include, for example, the necessity to reduce or stop professional activity or education. Living with a rare disease can also bring about challenges regarding domestic tasks, transport and mobility, leisure activities, self-care, financial burden and discrimination in the labour market.

For more information on INNOVCare and a full list of project partners click here. Please contact Raquel Castro, EURORDIS Social Policy Senior Manager, with any questions:

Eva Bearryman, Junior Communications Manager, EURORDIS

Page created: 18/11/2015
Page last updated: 18/11/2015
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases