1. Scope of the project
  2. Why is this project important for the rare disease community?
  3. Objectives of the project
  4. Role of EURORDIS
  5. Outcomes of the project

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 and analysis 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 and regional 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.


  • Communication, including the coordination of the internal and external communication of the project as well as the organisation of the ad-hoc advisory group;

  • State-of-the-art analysis of the social needs of people with rare diseases and of social care in Member States, through a European-wide survey (see results report and infographic) and the study of care pathways in a selection of Member States;

  • 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 (through the new RD-Action and the Commission Expert Group on Rare Diseases).

Outcomes of the project


This project is co-funded by the European Union
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.

Page created: 17/11/2015
Page last updated: 05/11/2019
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases