Palliative care in rare diseases: providing support beyond diagnosis
People living with a rare disease, along with their families and caregivers, face complex challenges throughout their lives. Many of these diseases are chronic, progressive, or disabling, making it
«The role of Pediatric Palliative Care Units is key to give visibility to siblings of sick children inside the family»
S4R: What does it mean to receive palliative care? Which kind of attention do these children receive? PPCU: Pediatric palliative care is defined by the WHO as the active and total assistance of the