Nowadays the opinions of patients, especially if they are affected by rare diseases such as the hemoglobinopathies, are considered as relevant as the opinions suggested by politicians, healthcare professionals and professionals of the European regulatory agencies.

As a consequence, their involvement leads to the necessity to count on people who are more and more aware and trained, ready to be representatives of the entire patients’ community and not of themselves. To transmit accurate and reliable information is an interest of patients and citizens and it is a commitment for Fondazione Gianni Benzi, that is also involved in activites related to the hemoglobinopathies.

In this field, Fondazione Italiana “L. Giambrone”, involved in the research and treatment of the thalassaemia, is pleased to present, in collaboration with the Italian Associations Advocacy Council (IAAC), the second cycle of the empowerment workshops addressed to patients, healthcare professionals and associations representatives.

The aim is to provide them with the suitable knowledge in order to have an active and aware role in clinical trials, learn about the medicines development process and understand the role and functions of the regulatory agencies.

The cycle of these new training workshops is organised in 3 meetings to be held in Rome at Uniamo Federazione Italiana Malattie Rare Onlus headquarters and they will be led by the bioethicist Sara Casati of Università Milano – Bicocca. Here following the dates:

• Basic workshops, foreseen on the 14th March and the 9th May 2020
• Advanced workshop – (clinical trial analysis and the related informed consent) to be held on the 23rd May

The patient empowerment is a key factor in ensuring a healthcare focused on patients and their therapeutic needs.

For more information you can contact the secretary at segreteriaIAAC@gmail.com