In the Sonnino room of the Palazzo Medici Riccardi, the little Mariasole Pia Izzo and Brando Ballini, who suffer from Sotos syndrome, handed over a copy of the glossary to the mayor of the capital Dario Nardella and Sara Funaro, the welfare councilor of the municipality of Florence. In fact, the delivery of the glossary is intended as a moment where the local community in all its articulations is called to know better and reflect not only on the disease and the specific needs that follow from it, but also on the quality social integration of affected people from this pathology and more generally from a rare genetic syndrome.
The children symbolically handed over the words about their illness.
“Our goal is equal rights in the health sector for children suffering from rare diseases – emphasizes the mayor of the capital Dario Nardella – Any effort is needed on the part of research and health structures, because the principle of universality of health care only on the basis of numbers Rare diseases deserve it The city of Florence and the municipality of Florence are close to these realities in order to give them all the support they need. diseases “.
“We need to focus on rare diseases,” says Sara Funaro. , which they bring with them in a small number, but also complex stories to be studied and supported. “
An unexpected diagnosis burdens all families who receive it. For this reason, the Assi Gulliver Association has decided to make a trip that provides delivery to local institutions of the first glossary explaining these pathologies: “This is one of the ways to support families and celebrate our first 10 years with life – explains Silvia Cerbarano, national president of Assi Gulliver – We are pleased to be able to draw attention to the syndromes that have entered our homes.The first approach to the disease is precisely in words, so distant and difficult to understand, because they were so far away from everyday life in every family.That’s why we know that getting to know the meaning of these words is a first aid for families who have just received the diagnosis, for this reason our glossary is colorful , empathetic and kind “.
A glossary therefore, made with the hearts of mothers and fathers and with the precious support of the Scientific Committee, which boasts names such as Domenico Coviello (Irccs Giannina Gaslini from Genoa), Donatella Milani (IrccsS Fondazione Ca ‘Granda Ospedale Maggiore Policlinico di Milano) , Manuela Priolo (Ospedali Riuniti Bianchi-Melacrino from Reggio Calabria), Luigi Mazzone (Polyclinic Tor Vergata of Rome), Alberto Spalice (Polyclinic Umberto I of Rome), Enza Raiano (Aorn Antonio Cardarelli from Naples), Silvia Youth (Irccs Fondazione) Ca ‘Granda Maggiore Hospital’s outpatient clinic in Milan).
Assi Gulliver is the first Italian association to bring together and support the families of patients with Sotos and Malan syndromes. Its goals include raising awareness of topics such as rare diseases and disabilities, promoting the social inclusion of people affected by these syndromes.