Fondazione Gianni Benzi has always been involved in providing citizens and patients with scientifically proved and updated information in the fields of research and public health.
Coronavirus: IMI call for therapies and diagnostics
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News
Rare Disease Day 2020: raising global awareness
This year the Rare Disease Day was held on 29th February 2020, the rarest day of the year dedicated to raising awareness for the 300 million people living with a rare disease.
Empowering patients: haemoglobinopathies and clinical trials
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.
Italian web portal launched for rare diseases support
The web portal “www.malattierare.gov.it – insieme nel mondo delle malattie rare” has been launched on the 20th February 2020. It was promoted by the Ministry of Health in collaboration with the Rare Diseases National Centre of the Istituto Superiore di Sanità.
Fondazione Benzi vs. Fake News!
The spreading of Coronavirus infection has been accompanied by the spreading of fake news! You are powerful. Be wise. In order to avoid the uncontrolled spreading of fake news, it is crucial to verify it before the sharing! Fondazione Gianni Benzi onlus provides you with some tips.
Our activities on the Sickle Cell Disease
Sickle Cell Disease (SCD) has been recognized as a global public health issue; it affects millions of people, including children, throughout the world. More than 300.000 children are born each year with SCD and most of them in African countries.
New members in our Scientific Committee
The Scientific Committee (SC) of Fondazione Gianni Benzi is composed of relevant experts in the field. It advices on scientific topics and collaborates with the Board of Directors in defining the programmes and activities of the Foundation.
EMA, HMA and EC set ePI principles for EU medicines
The product information (PI) of a medicine includes the package leaflet for patients and the summary of product characteristics (SmPC) for healthcare professionals. These documents accompany every medicine authorised in the EU and explain how it should be prescribed and used.
Advancing medicines regulation with big data
The report proposes ten priority actions for the European medicines regulatory network in order to make a better use of big data to support innovation and public health.
Children help children
The Foundation dedicates a lot of efforts to involving patients and children in the research process. To this end, we started a collaboration with the Young Persons Advisory Group in Bari (KIDS BARI), composed by young people, both patients and healthy youngers, asking them to collaborate in SCD initiatives.
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