The Autumn Universities of the Alliance Maladies Rares will take place from September 23 to 26 on the web. They propose to the actors involved in the associations members of the collective a whole series of workshops covering their main fields of intervention.
To register, visit https://www.surveymonkey.co.uk/r/universites_20
- Wednesday 23: Lyne Valentino, in charge of research for the associations of the Rare Diseases Foundation
- Animation of 2 workshops, "the actors of the research in the MR" and "to know and understand the actors of the MR landscape".
- Thursday 24: Lyne Valentino, in charge of research for the associations of the Rare Diseases Foundation
- Co-animation of the 3 workshops
- Role of associations in the drug marketing process
- Management of drug stock-outs
- Explaining research to patients
- Friday 25: Prof. Daniel Scherman, Director of the Rare Diseases Foundation
- Intervention on the theme of SHS during the conference "State of the art of research on RM".
- Friday 25: Lyne Valentino, head of research for the associations of the Rare Diseases Foundation
- Moderation of the conference "State of the art of research on RM".
- Moderation of a workshop "Relations between associations and pharmaceutical industries
- Saturday 26: Anne-Sophie Yribarren, regional manager for the North of France and e-health referent for the Rare Diseases Foundation
- Intervention during the conference "How to appropriate the challenges of e-health as a patient association".