How Data Sharing & Advocacy are Transforming the Rare Disease Community
Join us in welcoming Charlene Son Rigby, CEO of RARE-X to the pod!
Charlene is a seasoned informaticist, accomplished business woman, and passionate mother to two, including one with a rare disease. In the fight to find her daughter’s diagnosis, she brought her tech savvy to the table and soon after the diagnosis was chosen to head up the company RARE-X which provides a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease.
Spearheaded by Charlene, the company believes that rare patient communities, equipped to securely gather and share their data with researchers and companies around the globe, will transform rare disease research – significantly expand diversity, equity, and inclusion in research and dramatically accelerate progress across rare diseases.
RARE-X recently merged with Global Genes, a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally through connecting, empowering, and inspiring the rare disease community. Charlene shares with us how this fresh partnership brings quality data and patient advocacy in the global rare disease community closer together to enable the combined organization to provide the next generation of rare disease advocates the tools and resources they need to accelerate their drive for treatments.