Global Genes Founder Nicole Boice Transitions from Chief Mission Officer Role, Remains on Board

Washington, DC — April 9, 2026 — Global Genes, a leading patient advocacy nonprofit dedicated to the rare disease community, today announced that Nicole Boice, Founder and Chief Mission Officer, will be stepping down from her Chief Mission Officer role. Boice founded Global Genes nearly two decades ago, and rejoined the organization following its merger with RARE-X in 2022. She is also the founder of RARE-X. Boice will continue to serve as an active member of the Board of Directors.

“It has been an incredible honor to found and lead Global Genes and RARE-X, and to co-lead the organization through its continued evolution,” said Nicole Boice. “I am proud of what we have built together in service of the rare disease community. I am now focused on advancing new initiatives designed to transform the rare disease landscape—driving greater visibility, connection, and investment to accelerate solutions for patients worldwide.”

“We are deeply grateful to Nicole for her extraordinary vision and leadership,” said Charlene Son Rigby, CEO of Global Genes. “Looking forward, Global Genes continues its profound commitment to eliminating the burdens faced by rare disease patients and communities worldwide. With our new strategic plan that launched in 2025, Global Genes is deepening our focus on equipping advocates with the tools, training, and trust they need to lead—activating communities, advancing research, and expanding the drug development pipeline.”

Global Genes was founded in 2008 to help build and unite the rare disease community. For almost two decades, Global Genes has been dedicated to connecting, empowering and inspiring the rare disease community.

Today’s patient advocates are leading in ways that weren’t possible even 10 years ago. Advances in therapy development, precision medicine and social media have laid the foundation for a fundamental shift in what advocates can achieve—and they are rising to the moment with urgency. Global Genes’ updated mission is to equip these remarkable patient advocates, and help them build the ecosystems needed to achieve critical progress.

About Global Genes
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients, their families and disease communities globally. For nearly two decades, we’ve equipped rare disease patients and advocates with tools, training and support – to connect patients with needed resources, activate communities and advance research. Global Genes serves the more than 400 million people around the globe, and the nearly one in 10 Americans affected by rare diseases. With over 800 patient advocacy group members in our Global Advocacy Alliance, we work with patient advocates, industry partners and academia to build vital ecosystems to progress critical work in rare disease. Learn more at http://www.globalgenes.org.