RARO E PREZIOSO E' DONNA
29 February 2020
CITTA DELLA SCIENZA Via Coroglio 57, Naples, Italy
Hosted by Università degli Studi della Campania Luigi Vanvitelli
10:30 Women scientists: the courage to get passionate about what is rare
Marina Melone: director of the Interuniversity Research Center in Neuroscience, professor of the University of Campania Luigi Vanvitelli Department of Advanced Medical and Surgical Sciences - Neurological Clinic II and Rare Diseases
Prof. Marina Melone will illustrate the contribution of some women scientists in understanding the universe of rare diseases: fundamental discoveries, from the awareness that the sex of an organism is determined by the presence of the X and Y chromosomes, followed by the discovery of DNA and cytogenetics up to the project of advanced therapies such as Gene Therapy, Cell Therapy, Car-T and other Precision Therapies such as new genetic editing techniques.
12:00 Rare Diseases .... Women make your voice heard!
Marina Melone, Valentina Fasano Associazione Italiana Adrenoleucodistrofia, Chiara Magaddino Famiglie SMA, Tina Grassini Parla con me, Maria Giuliano SIMPE Campania, Coordinamento Napoletano Donne nella Scienza
Chronic rare diseases require families to adapt to a very hard experience, to afford difficulties in obtaining a rapid and reliable diagnosis, to face the the weight of daily care and the high costs treatments. To the mother-son, mother-daughter psycho-biological dyad in rare disease universe, society has not provided sufficient patterns of attention and care. Women represent the instance of care par excellence, many tensions falls on the them, taking charge, care, support but also facing a diagnosis that involves personal physical suffering, discovering that she is the bearer of a genetic mutation and feeling responsible for your child's illness. The talk will focus on the importance of an early diagnosis, through advanced diagnostic strategies up to the use of neonatal screening.Download file