Megan O’Boyle, Patient Engagement Lead for RARE-X, discusses how rare disease patient

Two important representatives from RARE-X, Vanessa Vogel-Farley, RARE-X – Data

The use of artificial intelligence promises to accelerate the diagnosis of rare disease and speed

Before Amy Abernethy joined the U.S. Food and Drug Administration in early 2019, she had spent time

The advent of cell and gene therapies brings the rare disease community hope of powerful treatments

One way that RARE-X can help improve the diagnosis and treatment of people with rare conditions is

The lack of interoperability between data systems, concerns about patient privacy, and security

While there are technical, governance, and cultural barriers to establishing federated data systems

Rady Children’s Institute for Genomic Medicine recently completed a two-year pilot project with

Harsha Rajasimha’s first encounter with rare disease came in 2009 as a genomics data scientist

When the Ehlers-Danlos Society was relaunched as an international organization in 2016, research