In recent years the Federation has engaged in order to strengthen the dissemination and penetration of its resources and educational programme to the wider community of Italian patients and parents.
Pivotal to these efforts, as well as in the partnership of TIF with EU bodies and organisations such as EHA, Eurordis, EuroBloodNet, EMA to mention a few has been esteemed Board Member, Mr Loris Brunetta. Simultaneously, with the support and participation of Mr Brunetta efforts have also been made to share the example of Italy with other less experienced European countries that have in recent years seen an influx of thalassaemia and sickle cell disease patients.
In an effort to diversify and strengthen these efforts, a delegation visit at the headquarters of TIF took place on 7 February 2020 with Mr. Raffaele Vindigni, the newly elected President of United Onlus, Italian Federation of Thalassaemia, Rare Hemoglobinopathies and Sickle Cell Disease, and Mr. Marco Bianchi, Member of United Onlus’ Patient Advisory Board, former President of the local thalassaemia association in Ferrara and member of TIF’s Patient Advocacy Group.
On behalf of TIF, the discussion was led by Dr Androulla Eleftheriou, TIF Executive Director, and Dr Michael Angastiniotis, TIF Medical Advisor, with the active and productive participation of Ms Catherine Skari, TIF Senior Communications Officer, who is a fluent Italian speaker.
The purpose of the meeting was to discuss the possibility of collaboration with a focus on social benefits for patients, access to emerging therapies and the rising concerns about liver disease and hepatocellular carcinoma. The fruitful discussions yielded a number of possible activities to be undertaken with the participation of TIF however recent global developments has necessitated their delay.