The Research Department of the École des Arts Décoratifs – PSL was delighted to take part in the launch on Monday November 25 of the VULCA Exploratory Training and Research Chair “Vulnerabilities and Capabilities – Living with a Genetic Disease”, with the three co-directors of the Chair, Sophie Larger, Charlotte Jacquemot, Lisa Friedlander, the directors and teams of the three partner institutions, representatives of the two sponsors, EnsadLab teachers, researchers and doctoral students, and the representative of the patient associations. This chair will consolidate EnsadLab’s health-related axis and develop new research and innovation projects in this field through art and design.

Supported by three prestigious institutions, pioneers in their respective fields – L’École des Arts Décoratifs – PSL, l’École Normale Supérieure-PSL, and l’Institut Imagine – the VULCA chair aims to support and help patients, both children and adults, to “live with” illness, by providing solutions where science and medicine cannot immediately provide answers.

A chair combining medicine, design, exact, human and social sciences, in dialogue with the expertise and experience of patients, it aims to produce new knowledge at the crossroads of disciplines, and provide patients, caregivers and healthcare and research professionals with new tools and new ways of acting and interacting with their environment.

Projects at the heart of the approach
The inauguration was also an opportunity to discover three emblematic projects supported by the Chair:

– Audrey Brugnoli’s SACRe / EnsadLab “Peaux Éthiques” doctoral project, co-directed by Emmanuel Mahé, Christine Bodemer and Patrick Renaud, aims to alleviate the loss of sensation associated with certain rare genetic skin diseases and to help patients, particularly children, to reinvest their skin organ in a positive way, both in its cognitive dimensions and in those of social integration.

– Léa Tricaud’s SACRe / EnsadLab doctoral project “Terrata”, co-directed by Emmanuel Mahé, Célia Crétolle and Sophie Larger, aims to help children with anorectal malformations to understand and appropriate their digestive and defecatory functions, through design-based research.

– Dr Tamed Cloud”, an exploratory project co-directed by François Garnier and Nicolas Garcelon, offers a unique virtual reality datavisualization application that enables clinicians and researchers to subjectively immerse themselves in a corpus of clinical cases involving several thousand patients suffering from genetic diseases.

The Chair is supported by the Richard Mille Foundation and the Groupama Foundation.

Our warmest thanks go to the many committed players in research, teaching and care, and to the patient representatives who are making this project possible. Together, we are opening up new perspectives for more inclusive and humane healthcare.

Photos: Béryl