The recording of the Science/AAAS webinar on the subject “Knowledge is power: The urgent need to internationalize databases for rare disease patients” will be made available on September 29th at 12:00 PM EST.
The webinar is expected to last approximately 60 minutes, during which a board of global experts (among which Lucia Monaco, former IRDiRC Chair, who represents Rare Diseases International) will discuss the best way to put together an universal approach in order to gather, store, and share phenotypic and genotypic data for rare diseases, which would protect patient identities while efficiently sharing critical data needed to advance diagnosis and treatment.
Registration is mandatory and can be accessed here.
More information, as well as the full recording of the webinar, can be found here.