The Voice of Rare Disease
Patients in Europe
- Scope of the project
- Why is this project important for the rare disease community?
- Objectives of the project
- Role of EURORDIS
Scope of the project
INNOVCare (Innovative Patient-Centred Approach for Social Care Provision to Complex Conditions) addresses the social challenges faced by rare disease patients and the gaps in the coordination between medical, social and support services in European Union Member States.
This EU-funded project will give voice to the social needs of people living with a rare disease. It will support the EU and Member States in implementing necessary structural reforms in social care systems by developing and testing a holistic, personalised care pathway.
Why is this project important for the rare disease community?
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.
The innovative care pathway developed under INNOVCare involves linking health services to employment and the social and support services that a rare disease patient uses on a daily basis (school, transport, leisure services etc.), ensuring the transfer of information and expertise between service providers.
The care 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 people living with a rare disease and their families.
Objectives of the project
- Assessment of unmet social needs of people living with a rare disease and their families in Europe andanalysis of existing care models in a selection of EU Member States
- Proposal of an innovative care pathway bringing together national resource centres for rare diseases andregional case managers, in partnership with public bodies:
- Implementation of a pilot of this pathway in Romania
- Evaluation of the socio-economic impact and a cost-benefit analysis of the care model
- Exchange of good practices between resource centres gathered in an European network of services
- Analysis of opportunities to upscale the model to other Member States and beyond rare diseases
- Strengthening partnerships between public, private and civil society organisations.
Role of EURORDIS
- Coordination of the internal and external communication on the project
- Organisation of ad-hoc advisory groups with policy makers
- Organisation the final conference of the project
- State-of-the-art analysis of the social needs of people with rare diseases and of social care in Member States:
- Quantitative study on the needs of patients/families in their social and daily life and qualitative study with patients on care pathways and employment
- Study of care pathways in a selection of Member States; a comparative analysis between patients’ feedback and existing care systems to identify good practices and gaps
- Facilitation of the creation and governance of a European network of resource centres for rare diseases and the organisation of meetings for exchange of good practices;
- Representation of people living with a rare disease and their families in coordination with EURORDIS’ members and with EURORDIS Social Policy Advisory Group;
- Ensuring the link between INNOVCare, the rare disease community, key EU rare disease projects and relevant stakeholders (the link will be ensured through the new RD-Action and the Commission Expert Group on Rare Diseases).
This project is co-funded by
the European Union
The information contained in this publication does not necessarily reflect the official position of the European Commission.