The Auvergne-Rhône-Alpes Rare Diseases Expertise Platform is hosting its annual conference on the theme of “Innovation & Rare Diseases.” This event will provide an opportunity to learn about and discuss concrete initiatives that are transforming the field of rare diseases. 

Program:

• 9:30–10:20 a.m.:
  Welcome reception followed by the opening of the event by the Auvergne-Rhône-Alpes Rare Diseases Expertise Platform, Hospices Civils de Lyon, and Prof. Laurence Bouillet, COMARE, Grenoble-Alpes University Hospital
• 10:20–10:50 a.m.:
  Innovation and rare diseases in the National Rare Diseases Plan 4 (PNMR 4) by Johanne Menu, Rare Diseases Mission, General Directorate of Healthcare Provision (DGOS)
• 10:50 AM–1:00 PM:
  Innovations in rare diseases in the AuRA region – Several initiatives will be presented:
  • Care pathways for gene therapy for hemophilia in France
  • Innovation and Literacy: How to Deliver Patient Education Without Words
  • Simulation for the use of a new fetoscopy device for the treatment of transfusion-transfusion syndrome
  • And other initiatives to discover!
• 2:00 PM–5:00 PM:
  Roundtables bringing together healthcare professionals and patients around two themes
  • Innovation between the community and the hospital
  • Innovation and research in rare diseases
• 5:00 PM–5:30 PM:
  Closing remarks by the Auvergne-Rhône-Alpes Rare Diseases Expertise Platform