Rare Diseases (RDs) are mainly genetic conditions with a complex clinical and therapeutic approach and relevant psychosocial consequences. Most RDs are neurological conditions or systemic diseases with involvement of the nervous system requiring specialised care for their chronic and often disabling course. Besides a number of medical troubles, people with RDs and their families often experience loneliness, struggles and societal discriminations. Health professionals can also experience delusion, distress and sense of defeat in caring people with chronic, disabling and often untreatable diseases. The “Flight of Pegasus” is a national artistic and music competition dedicated to RDs, organises by the National Centre for Rare Diseases, National Institute of Health, Rome, Italy. Within the field of the Health Humanities, the initiative aims raising public awareness on RDs, transferring research knowledge for a community empowerment, to handle complex information and increase control over some societal pressing challenges about RDs, providing a great opportunity to reinforce human relationships under the binomial Art and Medicine in a stimulating intercultural network.
|Titolo:||Competing to raise awareness of rare diseases|
POLIZZI, Agata Rita Maria [Conceptualization] (Corresponding)
|Data di pubblicazione:||2019|
|Appare nelle tipologie:||1.1 Articolo in rivista|