“Our mission at Alexion for over 30 years has been to transform the lives of people affected by rare diseases. We try to do this in two ways. First through research and development, making transformative and truly effective medicines available to people. But we know that the drug, although it still represents a great step forward for a rare patient, is not conclusive. Therefore the second fundamental aspect for us is to work in collaboration with the entire ecosystem that revolves around the world of rare diseases to try to. identify those aspects that are still unresolved. Here, this campaign to raise awareness of the complex disease such as neurofibromatosis type 1 (Nf1) represents exactly our philosophy”. Thus at Adnkronos Salute Anna Chiara Rossi, Vice President & General Manager of Alexion Italia, during the presentation – today in Rome – of ‘We are infinite nuances. Beyond the signs of neurofibromatosis’, a project promoted by Ananas (National Association for Help for Neurofibromatosis, Friendship and Solidarity), Anf (Neuro Fibromatosis Association) and Linfa Association (Let’s fight against neurofibromatosis together), in collaboration with Alexion, AstraZeneca Rare Disease.
“We worked closely with the patient association and the scientific community to try to understand what the unexpressed needs of this community were – explains Rossi – in particular the pediatric community. And one of the aspects that emerged most was the fact that this rare disease is highly disabling from a functional and aesthetic point of view, therefore it has a very important social impact, but Nf1 often causes a lack of inclusion and acceptance from schoolmates. And clearly this is a dramatic aspect because school, education, growth are fundamental moments for children’s lives.”
Hence the idea of ”working all together on some materials – 3 guides for pupils, families and teachers – which could give precise information to the classmates of children affected by the pathology – underlines Rossi – but also to teachers and families. These booklets they were produced and created by the patients who spoke about their experiences, described the impact of the pathology on their daily lives and now they have finally been created and are ready for distribution. This truly represents a very important project because, in line with our philosophy, it responds to what is a very important, unexpressed and unresolved need for this community, with everyone’s help”. Rossi’s hope is that this project “can be widely adopted by all schools and we hope that the campaign can really contribute to improving the daily life of children affected by this pathology”, she concludes.
#Rare #diseases #Rossi #Alexion #neurofibromatosis #campaign #closer #patients
