1st Hirschsprung's Disease Conference: Replay Videos Now Available!
On November 23, 2024, the first Hirschsprung's Disease Conference was held at Robert Debré Hospital (AP-HP).
This initiative, jointly organized by the Reference Center for Rare Digestive Diseases (CRMR MaRDi) and the Francophone Association of Hirschsprung's Disease (AFMAH), brought together disease experts (doctors, surgeons, paramedical professionals: psychologists, stomatherapists, etc.) and patient association representatives.
Participants were able to discuss recent scientific advances, share their experiences and viewpoints, and express any difficulties encountered, with the common goal of proposing improvements in the understanding of the disease and patient care.
This particularly rich day was structured around presentations by professionals and patients, and round tables covering all aspects of Hirschsprung's disease. Discussions focused on improving the care pathway, especially during the transition to adulthood, the importance of multidisciplinary care and communication between different professionals and associations, as well as the latest advances in fundamental and genetic research.
To share the content of this conference with as many people as possible, a video recording of all discussions was made. A white paper is also being drafted, which will summarize the conference and propose concrete actions to be taken in the coming months and years.
Watch the entire conference in video ( in french):
Link 1🎥
Link 2 🎥
Link 3 🎥
Acronymes :
- CRMR MaRDi : Reference Center for Rare Digestive Diseases
- AFMAH : Francophone Hirschsprung's Disease Association
- AP-HP : Greater Paris University Hospitals
