Among its missions, Fondazione Gianni Benzi is working on Sickle Cell Disease (SCD), a serious inherited disease affecting also children with more than 300,000 annual births in collaboration with researchers coming from African countries, where the disease incidence is very high.

In this framework, a plan, including several activities and Information, Education and Communication (IEC) materials, tailored on the target audience in Nigeria, has been drafted to implement the awareness of the disease in this country. Moreover, 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. The first meeting was held last week on 24th January in Bari and it was the occasion to learn more about the disease in terms of pathogenesis, complications and available treatments. Young persons from KIDS Bari have actively collaborated in the review of some material developed by the Foundation, providing the paediatric patients’ point of view.

The Foundation has greatly appreciated their relevant contribution that will be the starting point for the performance of research initiatives for the SCD tailored for children.

We hope there will be further occasions to meet them and to learn from them! Your support in this collaborative initiative will be very appreciated!