The Voice of Rare Disease
Patients in Europe
PACIENTES, ASOCIACIONES, SERVICIOS
- 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
Why is this project important for the rare disease community?
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:
- Study on the needs of patients/families in their social and daily life;
- Study of care pathways in a selection of Member States;
- 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