Since 2015, the René Touraine Foundation and its international network on rare skin diseases have organized the drawing contest: Ma peau raconte – The Story of my Skin. This international contest allows everyone to express themselves on the delicate subject of skin disease.
It is an unprecedented opportunity to raise awareness among the general public about the challenges of rare dermatological diseases. It offers everyone the opportunity to share their talents. Everyone participates: children, adults, patients, health professionals, artists, schools, art workshops, hospitals!
The Necker-Enfants malades hospital, AP-HP and the rare disease expertise platform of the AP-HP.Centre Université Paris Cité hospital group are pleased to exhibit the winning drawings in the atrium of the Imagine building on the occasion of international rare disease Day on February 28, 2023.
The 2022 edition on the theme «Skin story» was organized in partnership with patients’ associations, the Necker-Enfants malades hospital (Paris – France), the Ospedale Pediatrico Bambino Gesù (Rome – Italy) and the ERN-Skin, the European reference network for rare skin diseases.
The works exhibited are those of the 14 winners from France, India, Lithuania, Romania and Turkey, among the 5 age categories (3-5 years, 6-9 years, 10-13 years, 14-18 years, 18 years and more). This year the jury awarded a special prize for the origami painting « Skin encounters : the history of the skins encountered ».
« Louis is an albino. He now understands his disease and its consequences. I told him about the contest and he wanted to tell his story with his disease.
He drew himself with all the anti-UV protection elements that he uses every day (sun cream, cap, covering clothes…). He made his glasses which are used against the light/UV but also for his strong correction (Louis is also visually impaired
with a vision of 1/10th with his glasses). He drew the sun which he crossed out because « it is not good for him ». And his little sister Marion who has the same disease as him. »
Rare skin diseases
There are more than 600 rare skin diseases. They have a major impact on patients’ lives: social exclusion, disability, limited life expectancy. Research brings hope, but to date, curative treatments remain very limited.