PROMOTE THE CENTRALITY OF PATIENTS
Patients are our motivation. Their well-being, their quality of life, their awareness are the reasons for our work.
We provide them with up-to-date and correct information on diseases, especially the rare ones, and promote contact and exchange between patient associations. We support them by making them more aware.
However, our awareness raising activity is not only directed to patients but also to all citizens. It is for their awareness and prevention that we are engaged in the organization and implementation of activities focused on doping and rare diseases, included genetic hemoglobinopathies and congenital metabolic diseases.
Patients ’ “guide Living well with Thalassaemia” is here
According to statistic data, there are approximately seven thousand people affected by thalassaemia. These data make us forget that Thalassaemia is a rare disease. But nowadays, thanks to blood transfusions and chelation therapy - that removes iron overload in the organs - surviving and life quality of thalassaemic patients have notably improved. The Guide «Living well with Thalassaemia» aims to provide a supporting tool to families and thalassaemic patients, in order to improve knowledge in the illness itself and in therapeutic solutions available to patients. It’s a tool open to new requests and needs from users.
INHERITED NEUROMETABOLIC DISEASES INFORMATION NETWORK
the patient and his treatment protocol as a resource of a shared network data in favor of scientific research.