In the General Hospital of Bari’s Federico Vecchio hall, in collaboration with the “Hereditary anemias in the child” CIR of the “F. Vecchio” Pediatric Operating Unit of Bari’s General Hospital, the Gianni Benzi Pharmacological Research Foundation introduced to the press the patient’s guide «Living well with thalassaemia». The guide is made by the Gianni Benzi Foundation in collaboration with the “Leonardo Giambrone” Italian Foundation for the Healing of Thalassaemia within the international DEEP project, supported by the European Community.
The Guide 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. That is why «Living well with thalassaemia» buds from listening to patients and associations. The Guide – which will be handed to all thalassaemic patients, associations, and to hospital units dealing with thalassaemia treatment – is a tool open to new requests and needs from users.
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. And it is also possible to keep iron levels in liver and heart under control with a simple magnetic resonance, avoiding liver and heart biopsies. Doctors have more tools available, nowadays, and therapeutic goals are often slowed down by difficulties patients have in following pharmacological therapies. In this scenario we find the Guide «Living well with thalassaemia», as a supporting tool to thalassaemic patients and their families.
The DEEP project, to which the patient’s guide «Living well with thalassaemia» belongs, is a research network funded by the European Community. Its purpose is to carry out clinical studies intended to complete presently existing information about the usage of the deferiprone drug, in order to use it in paediatric patients, by means of a new oral formulation. Deferiprone is a chelating drug that eliminates iron overloads developing in patients with some rare disease. At the end of the project, by means of three clinical studies, DEEP will provide data about pharmacokinetics, comparative safety/efficacy, and long term safety; data will be included in a Summary of Product Characteristics, associated with a new formulation especially tested for children.