Charlene Son-Rigby, Global Genes CEO
by Charlene Son-Rigby
CEO, Global Genes
The past year was a significant one for Global Genes, marked by its successful merger with patient data platform RARE-X. As we begin the new year, we do so with a sharpened focus on our mission to serve and empower rare disease patients and advocates.
In 2023, we organized our programs around three pillars: support, education, and research. This new structure revitalized existing programs and opened up new opportunities to integrate offerings to address needs across each of these pillars. Last year, in recognition of how patient advocacy has evolved in the past decade, we also put a spotlight on next-generation advocacy.
Today, advocates are driving many aspects of progress across the rare disease continuum, from advocating fiercely for loved ones with healthcare providers to driving early support and awareness for their disease, from sharing their powerful stories on social media to getting involved in or leading research and therapeutic development. This shift, along with the advent of technologies from gene editing to AI, is fueling a transformative time in rare disease.
Looking ahead to 2024, Global Genes remains committed to the pillars of support, education, and research. We are deepening our work in each of these areas in addition to important continued work in Health Equity and mental health. Among the new programs we are introducing this year include a storytelling program, a support program for caregivers, and the initiation of several research consortia including one in Pompe disease.
I look forward to continuing our important work, in collaboration with you, in 2024.
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