The fragmentation of the right to health in the pandemic crisis: the case of patients with rare diseases

The right to health has assumed a crucial role in guiding the strategies adopted to fight the pandemic, causing at the same time delicate balancing problems with other fundamental rights, which have often found themselves withdrawing in order to guarantee the priority protection of health. Even more, the need to offer care to Covid patients has led to a reduction in care services dedicated to other patients, whose possibilities of access to the health system have greatly decreased, exacerbating their already fragile conditions. This is the case, for example, of patients with rare diseases, who, precisely because of the particular conditions of their pathologies, represent a minority within the same healthcare landscape, only recently subject of adequate regulatory attention. As will be discussed in the panel, the difficulties and solutions addressed in this sector can offer important insights for balancing the rights involved and for future developments of health systems.