RARE-X Information Session

April 12, 2023

This session was recorded April 2023

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 […]

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

Global Genes CEO Charlene Son Rigby spoke at the virtual V-BID Summit on March 8th, 2023. The […]