Justin’s odyssey: a journey in rare disease data sharing

19 Oct 2017

Justin Vachon was born in 1997 with a rare neurological disorder. His family shared his genetic data through Matchmaker Exchange, bringing their diagnostic odyssey to an end 19 years later. The video was released as part of GA4GH Connect, the five-year strategic plan of the Global Alliance for Genomics and Health (GA4GH), which aims to enable real-world data sharing by 2022.

Latest videos

2 Feb 2024
GA4GH Fireside Chat with Heidi Rehm and Geoff Ginsburg
See more
1 Jan 2023
Implementing Data Connect — example 1 (CINECA)
See more
1 Jan 2023
Implementing Data Connect — example 2 (dbGaP)
See more