Social Care Systems / UK-Genetic Interest Group / Allianz / RD / /
Continent
Europe / /
Country
Germany / Hungary / France / Italy / Bulgaria / United Kingdom / Sweden / Spain / / /
Facility
Research Institute / The Swedish Institute / Leibniz University / University Paris Val de Marne / Mario Negri Institute / /
IndustryTerm
public web-sites / disease management / reference network / /
Organization
National Alliance / Hungarian Federation of People / Bulgarian Association for Promotion of Education and Science / Canary Foundation of Investigation and Health / Institute for Rare Diseases / Swedish Institute for Health Economics / Mario Negri Institute for Pharmacological Research / London School of Economics / European Union / European Organisation for Rare Diseases / Steering Committee / Leibniz University Hannover / Advisory Committee / Public Affairs Studies Foundation / Instituto Superiore di Sanita / /
Expected outcomes 1. An integrated and harmonized set of instruments to assess and monitor socio-economic burden and HRQOL of patients affected by RD and their caregivers. These instruments will help measure the impact