Project Duration – 20.04.2010 – 20.04.2013 (36 months)
12 Partners
Fundación Canaria de Investigación y Salud (FUNCIS), Spain
Instituto de Salud Carlos III (ISCIII), Spain
Instituto Superiore di Sanita (ISS), Italy
Federación Española de Enfermedades Raras (FEDER), Spain
Bulgarian Association for Promotion of Education and Science (BAPES), Bulgaria
London School of Economics and Political Science (LSE-Health), United Kingdom
University Paris Val de Marne (UPVM), France
Leibniz University Hannover (LUH), Germany
The Swedish Institute for Health Economics (IHE), Sweden
Universita Commerciale “Luigi Bocconi” (Bocconi), Italy
Centre for Public Affairs Studies Foundation (CPASF), Hungary
Mario Negri Institute for Pharmacological Research (IRFMN), Italy
7 Collaborating Partners from EU
Total Budget: 1 175 044 euros
EAHC Co-Funding: 705 022 euros
Website: BURQOL-RD
General objectives:
The main aim of this project is to develop a disease based model capable of quantifying the socio-economic burden and Health-Related Quality of Life (HRQOL) for patients in Europe with rare diseases (RD) and their caregivers. The model that will be generated will not only be suitable to apply a wide range and hopefully all RD known to date, but it will also be sufficiently flexible to identify and adapt to the challenges faced by the different Health and Social Care Systems of EU Member States.
Project Coordinator: Prof. Julio López Bastida, Fundación Canaria de Investigación y Salud (FUNCIS), Spain