Webinars for the general public to better understand research
‘Health Data & Rare Diseases’
The Rare Diseases Foundation, the Health Data Platform, the BNDMR, and France Assos Santé invite you to a series of three webinars on health data and rare diseases, designed for patient organizations.
Episode 1:
Health data: understanding, protecting, and advancing research
With Arthur Dauphin & Alain Olympie (France Assos Santé) and Caroline Guillot & Eliza Regnier (Health Data Platform)
📅Date: June 29, 2026
🕧 Time: 12:30 p.m. - 1:30 p.m.
📍 Location: Online
Register now!
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Registration
Episode 2:
Health data on rare diseases: Who uses it and how?
With Anne-Sophie Jannot and Victor Hannothiaux (BNDMR)
📅Date: October 15, 2026
🕧 Time: 12:30 p.m. - 1:30 p.m.
📍 Location: Online
Registration coming soon
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Registration (coming soon)
Episode 3:
Access, Governance, and Usage: What Role Do Nonprofits Play?
With Arthur Dauphin & Alain Olympie (France Assos Santé) and Caroline Guillot & Eliza Regnier (Health Data Platform)
📅Date: December 2026 (exact date to be announced)
🕧 Time: 12:30 p.m. - 1:30 p.m.
📍 Location: Online
Registration coming soon