Collaboration will offer education, services, and access to secure data-collection technology and

This paper explores RARE-X’s patient-centric approach to developing flexible and

RARE-X and Critical Path Institute align on their mission and commitment for data sharing to

Geoff Rhyne’s daughter Ella began missing milestones at around three months of age. His wife, a

Lisa Manaster learned the value of data at Columbia University while earning a master’s degree in

RARE-X, the collaborative platform for global data sharing and analysis to accelerate treatment for

RARE-X expands its leadership team to support the organization’s rapid growth. Aliso Viejo,

When Ron Garber’s daughter Yaya was diagnosed with 4H Leukodystrophy, he sought out some large,

In January 2021, a group of advocates and parents formed the Coalition to Cure CHD2, a nonprofit

Advocacy organizations representing eleven rare diseases initiate efforts to improve patient data

Three years ago, at a New Jersey conference, three patient groups focused on the rare