RARE-X GDPR Overview

November 9, 2022

In this video, RARE-X’s Data Protection Officer, Barry Weber, explains how RARE-X achieves GDPR compliance and protects users on the RARE-X platform.

CEO Charlene Son Rigby Talks Drug Development and the Rare Research Roadmap

Charlene Son Rigby, CEO of Global Genes, talks about rare drug development, how patient advocates can contribute […]

Finding and Retaining Volunteers was part of the Skill Building track at the Patient Advocacy Summit in […]

Mental Health for RARE Adults was part of the RARE Adults track at the Patient Advocacy Summit […]

Lara Bloom, President and CEO of The Ehlers-Danlos Society, talks about why learning about Ehlers-Danlos Syndrome is […]

During this session, you’ll hear about re-analysis and re-testing for those who are undiagnosed. Speaker: Shruti Mitkus, […]

Hear from several Global Advocacy Alliance members as they share how “GAA” has helped their community and […]

Hear from patients and a medical student who have participated in the RARE Compassion Program! The RARE […]

RARE-X is a program of Global Genes created to accelerate rare disease research, treatments, and cures by […]

Congratulations to the five organizations who received the 2022 RARE Meet-up Patient Impact Grants, which include financial […]