Xplore RARE-X

Two Leading Rare Disease Organizations Join Forces to Enable and Accelerate Patient-Led Engagement and Advance Research

Global Genes and RARE-X to Merge, Creating Next-Generation Patient Advocacy Engine

Aliso Viejo, Calif.—October 12, 2022—Global Genes and RARE-X, leaders in rare disease patient advocacy and capacity building, today announced that their respective boards of directors have signed a definitive agreement to combine the two organizations. This merger will 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.

“This patient-focused, and science-driven partnership will change the world,” said Luke Rosen, Founder KIF1a.org. “The merger of RARE-X and Global Genes represents a paradigm shift which clearly establishes the patient community as the key to translational research and patient access. The result of this partnership is two forces coming together to create something nobody thought was possible.”

RARE-X grew out of a need identified through Global Genes to improve the collection and sharing of rare disease patient data to shorten the diagnostic odyssey, fuel drug discovery, and drive development of treatments. In 2019, RARE-X was established as a free-standing nonprofit and began developing the technology platform, infrastructure, and talent to bring this vision to life, with a focus on data collection and federated data sharing for rare disease patient data.

The RARE-X platform launched in June 2021 and is expanding rapidly, with over 45 patient organizations currently leveraging the platform. In October 2021, the two organizations formed a partnership to enable the more than 360 rare disease patient communities that are part of Global Genes Global Advocacy Alliance to securely gather, structure, and share their data to accelerate research and new treatments. Both organizations see tremendous potential within a combined organization for the RARE-X platform and research programs to align with Global Genes’ initiatives to empower patient-led drug development, health equity, and critical capacity-building efforts for patient communities.

“What was apparent to all of us was how closely aligned the missions of both organizations are and the synergies that would result from combining them,” said Charlene Son Rigby, CEO of RARE-X and rare disease advocate whose professional life has focused on building organizations at the intersection of data, technology, and life sciences. “As a mother of a daughter with a rare neurodevelopmental condition, the first place I turned to for help when we started a foundation was Global Genes. The critical role Global Genes has played with those new to advocacy will continue, but with the combination of RARE-X, we will be able to help advocates and researchers in a deeper and more engaged way as they seek to drive disease understanding, spur the development of therapies, and change what it will mean to have a rare disease diagnosis.”

The agreement follows months of work by an exploratory committee made up of leadership and representatives of the Board of Directors of both organizations. The merger is expected to close by December 31, 2022. At that time, Son Rigby will become CEO of the combined organization. Craig Martin, a Global Genes and RARE-X board member who has been serving as Global Genes’ interim CEO since October 2020, will continue in that role to support transition and integration efforts until the end of 2022, at which time he will join the combined board of directors and continue to support the organization in that capacity.

“As both organizations have expanded and enhanced our offerings to meet the evolving needs of rare disease patients and communities, we’ve seen more and more points of convergence,” said Craig Martin. “I’m extraordinarily excited about the potential we have to scale our impact together, and about Charlene’s leadership of this new organization. She truly represents the next generation advocate we aim to serve, and also brings tremendous business, technology and science background to the role.”

“Global Genes has long worked to educate patient advocates about what they need to do to advance research and attract the interest of biopharmaceutical companies to pursue a treatment for their conditions,” said Nicole Boice, founder of Global Genes and RARE-X and chief mission officer of the combined organization, where she will head partnership and development efforts. “We are now able to provide patient advocates with the tools and technology that will allow them to be better partners in early-stage research and development and to transform the landscape for their diseases.”

The Global Genes and RARE-X brands will remain, and the associated teams will continue to focus on their core programs and unique offerings in support of the rare disease advocacy community. Walt Kowtoniuk, venture partner at Third Rock Ventures and a current member of the RARE-X board, will serve as the chair of the combined organization board.

“In many ways, this merger is a natural extension of the partnership announced a year ago,” said Walt Kowtoniuk, chair of the combined organization. “RARE-X and Global Genes both aim to enable the patient advocate. Combining the organizations enhances their shared commitment to patients, while positioning the organization to continue to grow and adapt with the changing needs of a more sophisticated and engaged generation of advocates.”

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 and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf ⁠— helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit our Resource Hub.

About RARE-X

RARE-X is a 501(c)(3) rare disease technology nonprofit focused on supporting the acceleration and development of life-altering treatments and future cures for patients impacted by a rare disease. Enabled by best-in-class technology, patients, researchers, and other technology vendors, RARE-X gathers structured, fit-for-purpose data to share broadly, benefitting from 21st-century governance, consent, and federated data-sharing technology. RARE-X is building the largest collaborative patient-driven, open-data access project for rare diseases globally. For more information, visit www.rare-x.org.


Julie Dietel

Finn Partners



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