ENCOURAGING THE CENTRALITY OF PATIENTS

KNOWLEDGE TRANSLATION AND PATIENTS EMPOWERMENT

Patients are key actors in the scientific research process and advancements.

Fostering patients’ involvement in this framework may ensure that their health needs and priorities are better identified and met.

Therefore, we are actively committed in providing patients and citizens with accurate and reliable information on specific topics in the health field.

We also encourage a closer collaboration with patients and Advocacy Patients Groups in decision-making processes regarding their health by creating regulatory and ethics expertise and skills.

Moreover, activities focused on disseminating scientific research results in a clear and verifiable way are carried out.

AWARENESS INITIATIVES

Our awareness raising activity is specifically directed to patients and the general public as well.

In the era of easy knowledge circulation, not only the advantages (in terms of rapid acquiring relevant information by various media and IT tools) but also the risks are increasing for citizens, in terms of fake or unproved news on health and wellbeing.

All the informative material developed within these initiatives is disseminated through our social media channels (Facebook, Twitter and LinkedIn). Discover more here below!

FGB VS. FAKE NEWS
THE VALUE OF BLOOD DONATIONS
RARE DISEASE DAY 2022
TUMORE, MA NON TIMORE (Tumour, but not fear)

Patients’ guide "Living well with Thalassaemia” is here

Despite being a common disorder in some regions such as Europe, we cannot forget that Thalassaemia is a rare disease. But nowadays, thanks to blood transfusions and chelation therapy, 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.

INHERITED NEUROMETABOLIC DISEASES INFORMATION NETWORK

The patient and his treatment protocol as a resource of a shared network data in favor of scientific research.

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