Rare Lives – the meaning of living a rare life
Palazzo Penna – Apollo Room – h. 17-19
Aldo Soligno – photographer of photo agency Echo, author of the project
Prof. Bruno Dallapiccola – Geneticist , Scientific Director of the Pediatric Hospital Bambino Gesù
Nicola Spinelli Casacchia – President of UNIAMO FIMR Onlus Italian Federation for Rare Diseases
Serena Bartezzati – Comunication for UNIAMO FIMR Onlus
The photo agency Echo, with the photographer Aldo Soligno, and the Italian federation for rare sickness UNIAMO, have decided to undertake a process within the European Union to investigate a social issue of high sensitivity: the quality of life of those who suffer a rare disease. A search of the similarities and differences between the conditions of patients with rare diseases in the European Union. A survey of their needs, their hopes, but also a project that wants to lay the foundations for the construction of a network that could connect the experiences of people living these conditions, and make conscious and proactive the others. The project involved 7 European countries with the objective, shared by the community of rare patients, to identify differences and move towards a uniformity of care for all.