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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 […]
Read moreFinding and Retaining Volunteers: Patient Advocacy Summit Session
Finding and Retaining Volunteers was part of the Skill Building track at the Patient Advocacy Summit in […]
Read moreMental Health for RARE Adults: Patient Advocacy Summit Session
Mental Health for RARE Adults was part of the RARE Adults track at the Patient Advocacy Summit […]
Read moreMay is Ehlers-Danlos Awareness Month – Learn More About EDS
Lara Bloom, President and CEO of The Ehlers-Danlos Society, talks about why learning about Ehlers-Danlos Syndrome is […]
Read moreGenetic Diagnostics: Focus on Re-Analysis & Re-Testing for Undiagnosed
During this session, you’ll hear about re-analysis and re-testing for those who are undiagnosed. Speaker: Shruti Mitkus, […]
Read moreWhy Join Global Advocacy Alliance?
Hear from several Global Advocacy Alliance members as they share how “GAA” has helped their community and […]
Read moreRARE Compassion Program
Hear from patients and a medical student who have participated in the RARE Compassion Program! The RARE […]
Read moreRARE-X Information Session
RARE-X is a program of Global Genes created to accelerate rare disease research, treatments, and cures by […]
Read more2022 RARE Meet-up Grants Highlight Video
Congratulations to the five organizations who received the 2022 RARE Meet-up Patient Impact Grants, which include financial […]
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