2024-02-29 09:00:07
Today is International Rare Disease Day, 19th edition. The opportunity to raise public awareness of these diseases and provide better access to diagnosis. Nearly one in 2,000 people suffer from a rare disease, or nearly 300 million people worldwide. Acquired in childhood or developed in adulthood, more than 70% of these diseases are genetic and most of them have no curative treatment.
What is a rare disease? How to live with it? How to improve screening and care? Finally, where is the research?
We offer you a focus on the Disease of Children of the Moon or xeroderma pidementosum.
- Professor Smaïl Hadj-Rabia, dermatologist and geneticist in the Dermatology department of the hospital group Necker-Sick Children. Coordinator of the Reference Center for cutaneous genetic diseases
- Pr Ouafa Hocar, professor of Dermatology and head of the Dermato-Pediatric Functional Unit at CHU Mohammed VI de Marrakech and president of the Moroccan Society of Pediatric Dermatologists
► At the end of the show, Professor Antoine Pelissolo, head of Psychiatry department at CHU Henri-Mondor de Créteil and national secretary in charge of the hospital, tells us about the deterioration of psychiatric emergency services in France. The suicide, on February 14, 2024, of a man awaiting psychiatric hospitalization at the Toulouse University Hospital was added to the list of several attacks that occurred in the same place at the beginning of the month. On February 21, 2024, a letter demanding the creation of a commission of inquiry into the crisis of emergencies and “vital losses of opportunity” was sent to the President of the National Assembly, by six deputies, unions and associations.
Musical programming:
► Guinea Our Paradise – Fonike
► Teddy Swims – Lose control.
#World #Rare #Disease #Day