Rare diseases, Tommasi: BioMarin alongside children with achondroplasia

“BioMarin is a company committed to the fight against rare diseases and deals with various pathologies where children are involved. Children are the future and we want to accompany them and be close to them “. Thus Maria Tommasi, BioMarin Medical Director Italy, on the sidelines of the presentation of “The roof of the world”, the book dedicated to the children and families of those suffering from achondroplasia, a rare genetic disease that affects the cartilages, causing a decrease in development skeletal and therefore a serious defect in stature. Read also The book was born from the story of the experiences of seven children, which allowed the author Sabina Colloredo and the designer Marco Brancato to create a special story to promote awareness and information on the disease and on the lives of those affected. “It was a very fascinating project – continues Tommasi – we accompanied these seven children in their narration, fears and uncertainties all the way up to the release of this very intimate book. As a company we want to be ever closer to these children and their families, looking through stories and metaphor for a way to talk and make known these rare pathologies and in particular to understand what the patients who suffer from them feel. “” teaching that this book wants to give to children with achondroplasia is very simple: to look higher and higher – explains Marco Sessa, president of Aisac Onlus (Association for information and study of achondroplasia) – Stephen Hawking opened the London Paralympics in 2012 saying ‘Look at the stars, don’t look at your feet’ this is also the main teaching of this wonderful story ”.