April 11, 2024 marked a significant milestone in the field of e-health with the gathering of 40 project leaders and experts at the Ateliers de Co-design en E-santé. This event was an opportunity to present and support five remarkable initiatives aimed at improving the care of rare diseases through innovative digital solutions.
Winning projects :
1. SCLER AIME
Supported to the tune of 5,000 euros
The SCLER AIME project, led by Dr Chloé Comarmond and Dr Théo Pezel, is focusing on the cardiac damage associated with systemic scleroderma. The use of iECG connected watches by scleroderma patients could revolutionize early detection of this potentially serious complication.
2. e FTE OI
Supported to the tune of 5,000 euros
Yohan Mauve, a nurse and doctoral student in nursing science, is behind the e-ETP-OI project. This digital therapeutic education platform targets rare disease patients in the Indian Ocean, offering easy access to quality education despite geographical constraints.
3. Deneo KID
Supported to the tune of 5,000 euros
Marietta Kersalé, occupational therapist and research engineer, leads the Deneo KID project, which aims to develop a digital platform to improve integrated care for children with neuromuscular diseases. This initiative is based on co-construction with stakeholders to meet the specific needs of these children and their families.
4. APOLON
The APOLON project team, led by Prof. Isabelle Pellier and Mélanie Hippocrate, is proposing a digital solution to support physical activity in oncopediatrics. This application aims to overcome the physical, psychological and organizational obstacles encountered by young patients suffering from rare diseases.
5. Prev Hypo Pass
The Prev Hypo Pass project, piloted by Pr Agnès Linglart and Nathalie Gourmelon, presents an interactive e-passport for monitoring chronic hypoparathyroidism. Developed in collaboration with patients, this initiative enables personalized monitoring and improved communication with healthcare professionals.
These five projects selected at the Ateliers de Co-design en E-santé 2024 offer a promising glimpse into the future of rare disease care, thanks to advances in technology and innovation. They embody the ongoing commitment of healthcare players to meeting the specific needs of patients and improving their quality of life.