VULCA, cutting-edge research on rare diseases

VULCA is the name of the new “Vulnerabilities and Capabilities” chair at the Imagine Institute in Paris, which will be inaugurated on November 25, 2024. Its mission? Support patients, but also their families and caregivers, in order to help them “living with a genetic disease”, by providing solutions where science and medicine cannot respond immediately.

The combination of medicine, design and human sciences

This chair “interdisciplinary exploratory research and training” combines medicine, design, exact, human and social sciences and integrates the expertise and experience of associations, patients and their loved ones into the heart of its projects. The issue? Provide new tools and modes of action and interaction. To answer this, three prestigious institutions – the Imagine Institute, the School of Decorative Arts and the École normale supérieure – have joined forces. Leitmotif? “Only an interdisciplinary dialogue will truly give sick children, their families, caregivers and researchers the power to act. »

85% of patients in need of treatment

As a reminder, today, almost 50% of people living with rare genetic diseases do not have a diagnosis, and almost 85% do not benefit from targeted therapeutic treatments. “The alteration of their state of health, often seriously disabling and sometimes without visibility on its evolution, is a source of extreme vulnerability, physical and psychological, but also familial, economic and social, explain the initiators of this Chair. Children, the first to be affected by rare genetic diseases, evolve, with those around them, in a society that is not designed for them or adapted to their difficulties. »

Free yourself from all dependence and stigma

By drawing inspiration from concepts from the human sciences, such as empowerment or encapacitation, and by mobilizing methodologies “participatory and conceptual” of research through design, the training, research and development projects carried out within the framework of VULCA will enable patients to better cope with the uncertainties linked to diagnosis and treatment. They will also provide the necessary tools to free oneself, as much as possible, from any form of dependence on illnesses, stigmatization, fixed roles, or confinement within a predetermined community.

3 promising projects in progress

Several research projects are already under development, such as preventive and/or restorative artificial skins which aim to compensate for the loss of sensation associated with certain rare skin diseases. Likewise, doctoral research in design intends to support children suffering from the after-effects of anorectal malformations in understanding and appropriating their digestive and defecatory functioning. Finally, Tamed Cloud is a virtual reality device that allows doctors and researchers to immerse themselves in digital medical data. By interacting visually and through gestures with this ” cloud “, new interpretations of the data can emerge and thus generate new research hypotheses.

© Stocklib / alexraths