Videos

Crafting a Data Strategy — 2023 RARE Advocacy Summit

January 19, 2024

As part of the Becoming a Research Ready Organization track from the 2023 RARE Advocacy Summit, this panel will discuss data sharing and data federation, how to evaluate options, and the critical responsibilities around data governance.

Crafting a Data Sharing Strategy

Moderator:
Sanath Kumar Ramesh
Founder and CEO, Open Treatments Foundation

Panelists:
* Nasha Fitter
VP, Real World Evidence and Ciitizen Platform, Invitae

* Alex Betourne, PhD, PharmD
Scientific Director for Rare Diseases Cures Accelerator, C-path

* Vanessa Vogel-Farley
Senior Director, Research & Data Analytics, Global Genes

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