“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“. Like this 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 skeletal development and therefore a serious defect in stature.
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 pathology and on the lives of those affected. “It was a very fascinating project – continues Tommasi – we accompanied these seven children in the narration, in the fears, in the uncertainties all the way up to the release of this book which is very intimate. As a company, we want to be ever closer to these children and their families, looking through the story 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 are feeling “.
“The 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 the information and study of achondroplasia) – Stephen Hawking opened the London Paralympics in 2012 by saying ‘Look at the stars, don’t look at your feet’ this is also the main teaching of this wonderful story “.
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