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INNOVCare Project results demonstrate need for integrated care for rare disease patients

September 2018

Participants at the final INNOVCare Project conference in Brussels

The results of the INNOVCare Project (Innovative Patient-Centred Approach for Social Care Provision to Complex Conditions) were announced at the final project conference in Brussels last week. They demonstrate the importance of integrated care for people living with a rare disease and their families.

People living with a rare disease and their families need to access different types of care across various health, social and community services.

The first Europe-wide survey on the everyday impact of rare diseases, conducted within the INNOVCare Project by EURORDIS survey initiative Rare Barometer Voices, found that people living with a rare disease and their carers face complex pathways to access these services.

Patients and their family members are often forced to take on the challenging and time-consuming role of coordinating care between these different providers. 65% of the 3,000 rare disease patients and family members surveyed reported having to visit different health, social and local services in a short period of time.

INNOVCare Project – connecting the dots of rare disease care

The European Commission recognises that a ‘failure to meet the serious unmet social needs of people with a rare disease and their families affects people’s dignity, autonomy and other fundamental human rights’ and advised Member States to ‘facilitate multidisciplinary, holistic care’ for people living with a rare disease.

With this in mind, the 3-year EU-funded INNOVCare Project was created to bridge the gap in the coordination between medical, social and support services in EU Member States.

The project aims to create good practices on how to ensure patients and carers have access to integrated care that is connected across different services, and which takes into account the person’s needs in their daily life at home, school or work. A factsheet released by the project states that integrated care is essential for people living with a rare disease as it enables them to overcome their care challenges and to fully realise their human rights.

With the end of the INNOVCare Project in sight, the final project conference took place in Brussels last week. Organised by EURORDIS (in our role as a project partner), the conference brought together 100 participants from 20 countries, including representatives of the other project partners.

Project results: case management improves care

Through a pilot carried out in Romania, the INNOVCare project developed and tested a holistic, person-centred care pathway that brings together a national rare disease resource centre (the NoRo Resource Centre) with regional case managers and public bodies.

Research on the impact of the pilot demonstrated that people living with a rare disease and the carers who received the case management services improved their level of information about their disease and rights, their knowledge of available services and their capacity to self-manage.

One person receiving the case management services said, “It was great to have someone to take care of me and find for me the right services. It is a terrible feeling of being so lonely and not understood. This case management answered to my needs”.

Dorica Dan, Head of the NoRo Resource Centre added, “The case management service piloted really made the difference for patients and carers, providing them with support, tools and confidence to manage their care. It also supported the care professionals, who now have a point of contact who centralises the information on the patient and carer, and is able to coordinate with the various services”.

Based on the work carried out through INNOVCare, the project partners have also released a series of recommendations to guarantee integrated care is implemented and sustainable across EU Member States.

These recommendations comprise EU-wide and national measures, including to ensure that the EU Work-life Balance Directive, part of the European Pillar of Social Rights, takes into account the specific needs of people living with a rare disease. The project partners also recommend that support is provided to safeguard the continuity of Europe-wide platforms essential for the development and sharing of good practices in rare disease social and health care, including the European Reference Networks and the European Network of Resource Centres for Rare Diseases.


Questions about rare disease social policy? Contact Raquel Castro, EURORDIS Social Policy Director:

Eva Bearryman, Communications Manager, EURORDIS