Presentation on the Social and economic impact of a case management approach for people with rare and complex conditions in Salaj, Romania, held at the International Conference on Integrated Care (ICIC) 2018 in Utrecht, Netherlands, by Karolinska Institutet. Download the presentation here.
Poster on the Social and economic impact of a case management approach for people with rare and complex conditions in Salaj, Romania, presented at the Conference of the Swedish Health Economy Association (SHEA) 2018 in Lund, Sweden, by Karolinska Institutet. Download the poster here.
Poster on Measuring the effects of a case management approach on the quality of life of rare and complex disease patients, presented at ECRD2018 in Vienna by the Centre for Social Innovation (ZSI). Download the poster here.
Poster on drivers and obstacles of integrated care in different national contexts, presented at ECRD2018 in Vienna by the Centre for Social Innovation (ZSI). Download the poster here.
These outlines are an outcome of the INNOVCare Workshop in Advancing Holistic and Innovative Care for Rare Diseases and Complex Conditions in Cluj-Napoca, Romania, June 2017, providing examples for the roles and training outlines for case managers for rare diseases. Download the outlines here.
The “Memo on existing integrated care practices and exploration of possible application areas for rare disease patients” was elaborated by the Centre for Social Innovation (ZSI) in the scope of their work on social policy innovation based structural reforms in the scope of the INNOVCare project. Download the Memo here.
The Methodology Report “The effects of a case management approach on the quality of life of rare disease patients in Salaj, Romania: a randomised control trial of efficacy” was elaborated by the Centre for Social Innovation (ZSI) in the scope of the evaluation of the social impact of the INNOVCare pilot project in Romania. Download the…
Over 3,000 rare disease voices across Europe responded to the survey ‘Juggling care and daily life: The balancing act of the rare disease community’, providing for the first time robust European data on the impact of rare diseases on everyday lives. The results from this survey show that: Rare diseases have a severe impact on everyday life; The time and…
In April 2016 the European Commission Expert Group on Rare Diseases adopted new recommendations on how to support the incorporation of rare diseases into mainstream social services and policies. These recommendations aim at advising EU Member States and the European Commission on issues that should be considered when organising holistic care for people living with a rare disease within…
Actions performed by resource centres are generally specifically targeted to people living with rare diseases. Resource Centre services include information and guidance services, training courses, provision of information concerning social benefits, and documentation and research services. Daily support therapies, medical/psychological consultations and therapeutic recreation activities are often also provided by these centres. Resource centres could be defined as a…