They will take place online from September 24, 2021 and will offer actors involved in the associations members of the collective a series of workshops covering their main fields of intervention.
To register; https://www.surveymonkey.co.uk/r/universites_20
The Rare Diseases Foundation is proud to participate with the following interventions:
- Wednesday 23: Lyne Valentino, in charge of research for the associations of the Rare Diseases Foundation
- Facilitation 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 of the Rare Diseases Foundation
- Intervention during the conference "How to appropriate the challenges of e-health as a patient association".