The Fondation Maladies Rares is delighted to announce the results of its call for projects "Social and therapeutic innovations to improve the quality of life of young rare disease patients and their families", in partnership with the IRCEM Corporate Foundation.
This call has enabled us to select remarkable initiatives that promise to transform the lives of young patients and their families through innovative solutions.
A sincere thank you to the IRCEM Corporate Foundation for its generous support and ongoing commitment to rare diseases, making it possible to bring these promising projects to fruition.
Winners and Selected Projects :
🔹 Dr Nathalie Angeard - Université Paris Cité :
- Project: Perspective-taking training in young people with Duchenne muscular dystrophy.
- Objective: To develop a training method using digital tools to improve the ability of young DMD patients to take perspective, a crucial skill for their social and emotional interactions.
🔹 Pr Anne-Sophie Bonnet - Université de Lorraine :
- Project: Study of mandibular premolar agenesis and its innovative therapeutic solutions.
- Objective: To explore the effectiveness of cantilever bonded bridges as an alternative to implants for treating dental agenesis, while taking into account the specific needs of growing young patients.
🔹 Pr Thomas Edouard - RESTORE - CHU de Toulouse :
- Project: Improving the quality of life of young people with Marfan syndrome through adapted physical activities (APA).
- Objective: To offer a personalized program of adapted physical activities for young patients with Marfan syndrome, aimed at reducing sedentary lifestyles, improving physical fitness and promoting social inclusion despite the cardiovascular constraints associated with this genetic disease.
These projects illustrate a deep commitment to social and therapeutic innovation, aimed at significantly improving the quality of life of young rare disease patients and their families.