On Rare Disease Day, the IRCEM Corporate Foundation and the Rare Diseases Foundation are pleased to announce the three winning projects from their 2025 call for projects, "Social and therapeutic innovations to improve the quality of life of young patients with rare diseases and their caregivers." This call for projects aims to support concrete initiatives that can be implemented in the short term, improving the lives of children and adolescents and strengthening the autonomy of families.
A call for projects focused on quality of life
For the second consecutive year, the IRCEM Corporate Foundation and the Rare Diseases Foundation are joining forces to support innovative projects at the intersection of healthcare practices, digital technologies, care pathway organization, and the humanities and social sciences. The projects supported had to meet several criteria: developing the independence of sick children and adolescents, promoting their educational and social inclusion, offering therapeutic, technological, or organizational innovation, and demonstrating a tangible short-term impact for young patients and their caregivers.
In total, three particularly promising projects were selected by a committee of experts.
Three projects serving the daily lives of young people and their families
- Project: "Optimization of the Care Pathway for Patients with Alveolar Clefts using Dental Monitoring – OpaL-DM" – Prof. Damien Brezulier (Dentofacial Orthopedics Department, Rennes University Hospital) – Funding: €34,617.
Cleft lip and palate, including alveolar clefts, are among the most common congenital malformations of the orofacial region, requiring long-term, complex treatment involving numerous consultations, often far from the family home. The OpaL-DM project uses a teledentistry solution (Dental Monitoring, CE-marked device) to remotely monitor orthodontic expansion, using intraoral images taken by parents via smartphone and analyzed by an artificial intelligence algorithm. The study aims to demonstrate a significant reduction in the number of face-to-face appointments, while ensuring clinical follow-up, in order to reduce the organizational burden on families and promote children's autonomy and inclusion in school.
- Project: "RESONANCE: Cognitive Remediation and Rhythmic Serious Games in Cerebellar Developmental Anomalies" – Prof. Delphine Dellacherie (PSITEC laboratory, University of Lille) – Funding: €34,385.
Developmental abnormalities of the cerebellum, such as Joubert syndrome or Dandy-Walker malformation, simultaneously impact motor skills, cognition, language, and social interactions, requiring significant accommodations at school and in everyday life. RESONANCE offers rhythmic training via a serious game on a tablet, "Rhythm Workers," to stimulate a sense of rhythm in a fun way in 30 children aged 8 to 13 with developmental abnormalities of the cerebellum, compared to a control group using a game without a rhythmic component. Pre- and post-training assessments will focus on rhythmic abilities, executive functions, language, motor skills, social skills, and quality of life, with the aim of demonstrating measurable cognitive and social benefits and providing an accessible and scientifically validated tool.
- Project: "Practical support for young patients transitioning from pediatric to adult care: from the virtual to the real world" – Dr. Natasha Figueirido (Pitié-Salpêtrière Hospital) – Funding: €35,000.
In France, nearly one million young people aged 13 to 25 with chronic illnesses are affected by the transition from pediatric to adult care, a stage associated with a high risk of discontinuation of treatment and psychological distress. This project is based on the TransEND platform at Pitié-Salpêtrière Hospital and the T-OUT tool, a digital escape game that models the 11 key stages of the transition, to empower adolescents with rare endocrine diseases as they move to adult services. In a randomized study involving 60 patients aged 16 to 25, the impact of T-OUT will be assessed using the Good2Go questionnaire, quality of life, satisfaction, and trust in the doctor-patient relationship, with the aim of improving young people's preparation, limiting disruptions in care, and optimizing coordination between pediatric and adult teams.
A lasting partnership serving families
For more than ten years, the IRCEM Corporate Foundation has been supporting research and innovation projects focused on improving the quality of life of people with rare diseases and their caregivers, particularly children and families, in close collaboration with the Rare Diseases Foundation. From 2015 to 2024, this partnership has funded more than 28 research projects in the humanities and social sciences and in social and medical innovation, with a tangible impact on patients' daily lives.
By publishing the results of this call for projects on Rare Disease Day, the two foundations are reaffirming their shared commitment to developing and supporting innovative solutions that improve the lives of young patients and their families today, throughout their care and life journey. This momentum will continue this year with the upcoming launch of a new joint call for projects to support other initiatives that improve the quality of life of young people living with a rare disease.