18/05/2021  h. 21:49   
   Overview   |  
The successful cartoon Un amico raro becomes testimonial for a rare disease. Gruppo Alcuni, Rai Ragazzi and AIAF together in a project to raise awareness. Streaming on 22nd April at 11:00 am - 1:00 pm

20/04/2021 | Events |  The project will be presented during an event that will take place on Thursday, April 22 from 11:00 am to 1:00 pm Live streaming

Source: Gruppo Alcuni press office

There are thousands of children who every day watch the episodes of the Leo da Vinci series, while very few people know what Anderson-Fabry disease is, a rare lysosomal accumulation disease. This is a problem, since although only 700 patients are recognized in Italy, there are many more people who are affected, and a timely diagnosis would allow to intervene with appropriate therapies, avoiding the degeneration of the disease.
Here, then, is the idea of using a powerful vehicle of dissemination, a successful cartoon that gathers in front of the video at each episode thousands of children and young people but also their families, to talk about Anderson-Fabry disease and its symptoms, with the aim of involving parents who see in their children manifestations of pain and problems that have no explanation.
The project will be presented during an event that will take place on Thursday, April 22 from 11:00 am to 1:00 pm Live streaming

Will participate, together with Stefania Tobaldini President of AIAF (in presence, streaming or with videotaped messages):
Sen. Maria Elisabetta Alberti Casellati - President of the Senate of the Republic;
Hon. Fabiana Dadone - Minister for Youth Policies;
Sen. Paola Binetti - President of the Parliamentary Intergroup for Rare Diseases;
Hon. Fabiola Bologna - Member of the XII Commission for Social Affairs;
Hon. Lisa Noja - Member of the XII Commission for Social Affairs;
Dr. Manuela Lanzarin - Health Councillor of the Veneto Region;
Prof. Federico Pieruzzi - University of Milan - Bicocca
Dr. Gianni Carraro and Dr. Nicola Vitturi - Hospital of Padua
Dr. Luca Milano - Director Rai Ragazzi;
Dr. Sergio Manfio and Dr. Francesco Manfio - Gruppo Alcuni;
Dr. CinziaMaria Bellettato - MetabERN

During the event will be projected a preview of the special episode of the cartoon Leo da Vinci: a rare friend and will discuss with guests issues relating to the disease, the quality of life of patients, the situation in Europe and Italy in time of Covid.

The event will be moderated by Giuliana Valerio, Journalist, Communication Manager for AIAF and Ilaria Ciancaleoni Bartoli, Journalist, Director of OMaR.

HOW TO PARTICIPATE
IN STREAMING
To connect click on the following address or copy it on your browser and then insert ID and password.
ID: 962 196 3726
psw: 281067


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