#USA #Washington #Global Genes #Charlene Rigby #Fierce 50

Charlene Son Rigby Recognized as a 2026 Fierce 50 Honoree

In an inspiring announcement from Global Genes, the organization's CEO, Charlene Son Rigby, has been honored as one of the Fierce 50 honorees in the category of Social Impact for 2026. This recognition highlights not only her dedication to advancing medical research but also the significant impact of Global Genes in the realm of rare disease advocacy.

The Fierce 50 list, curated by Fierce Pharma, Fierce Biotech, and Fierce Healthcare, celebrates individuals and organizations making remarkable strides in the healthcare and biopharmaceutical landscapes. The chief goal of the Fierce 50 initiative is to showcase diverse talents and innovations that shape the future of medicine and improve patient outcomes. Ayla Ellison, the editor-in-chief of Fierce Life Sciences and Healthcare, stated, "The progress in this industry emerges from multiple facets, including executive leadership, advocacy efforts, and laboratory innovations."

Charlene Son Rigby's career spans various disciplines, from initial work in neuroscience research to focusing on bioinformatics and more recently transitioning her expertise towards addressing the challenges faced by those with rare diseases. Her journey encapsulates the critical need for bridging the persistent gaps between researchers and patients, an issue that remains a top priority in the medical community.

Under her visionary leadership, Global Genes has grown into a preeminent organization dedicated to rare disease advocacy. The collective effort aims to empower patient advocates by building robust support systems that facilitate vital medical progress. One notable initiative, the RARE-X research program, has successfully enrolled over 10,000 participants across 95 different rare diseases, partnering with more than 130 advocacy organizations. Approximately 40% of the participants reside outside the United States, showcasing the global reach of their initiative.

Global Genes also operates the Global Advocacy Alliance, which links over 890 advocacy organizations, providing essential resources, training, and peer network opportunities. Through the RARE Concierge program, newly diagnosed patients and their families receive tailored navigation support to help them understand their conditions and access necessary care.

Son Rigby’s commitment extends beyond her role at Global Genes; she also serves as the President of the Board for the STXBP1 Foundation, which she co-founded following her daughter's diagnosis with STXBP1 syndrome. Her personal experience adds depth and urgency to her advocacy efforts, underscoring the importance of patient-led perspectives in driving change.

In her acceptance of the Fierce 50 honor, Son Rigby remarked, "Rare disease research accelerates when patient advocates have real infrastructure and a seat at the table - not just goodwill but the training, tools, and connections to actually lead." Her vision for Global Genes is one that empowers the patient's voice, engaging them as crucial participants in the development of therapies that address their unique needs.

The addition of Son Rigby to the Fierce 50 roster is not just a personal accolade; it is a testament to the collective momentum of the 900 organizations in the Global Advocacy Alliance and the thousands of participants contributing to RARE-X. This honor serves as a platform to amplify their shared commitment to advancing rare disease research and developing solutions that will ultimately enhance patient care.

The 2026 Fierce 50 honorees embody a wide array of talent and visionary leadership that is reshaping the biopharmaceutical and healthcare spaces. From innovative startups to established entities, each honoree plays a critical role in fostering scientific discovery, enhancing community health, and expanding access to care. Their collective efforts are essential in reimagining and revitalizing healthcare both locally and globally.

About Global Genes

Global Genes stands as a leading nonprofit focused on improving the diagnosis, treatment, and quality of life for individuals affected by rare diseases. The organization leverages its patient-led research platform, RARE-X, to collect high-quality data across more than 95 rare diseases while collaborating with advocacy groups worldwide. The Global Advocacy Alliance facilitates connections among over 900 advocacy organizations, fostering the resources and networks vital for promoting progress in rare disease research and treatment.

For additional information about Global Genes and its initiatives, visit globalgenes.org.