Rare Disease Groups Global Genes and RARE-X to Merge

Organizations to keep individual brands, core programs while sharing resources

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Global Genes and RARE-X, two nonprofit organizations dedicated to improving the lives of people with rare diseases like cold agglutinin disease (CAD), announced they are joining forces, with the merger expected to close by the end of this year.

“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,” Charlene Son Rigby, CEO of RARE-X, said in a press release.

“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, interim CEO of Global Genes.

Global Genes is an advocacy organization founded in 2008 that aims to provide resources, connection, and community for people living with rare diseases. RARE-X was established as an independent nonprofit in 2019, with the aim of improving collection and sharing of data related to rare diseases to accelerate research.

“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.

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RARE-X launched its platform last year, and a few months later entered into a partnership with Global Genes to enable sharing of data for the more than 300 patient organizations in the Global Genes Global Advocacy Alliance. The Cold Agglutinin Disease Foundation, a CAD-focused organization, is also a member of this alliance.

“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.”

“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,” Boice said.

Both Global Genes and RARE-X will retain their individual brands once the merger is finished, and teams at both organizations will focus on their respective core programs. The groups also will collaborate to further provide resources and promote patient-led therapy development in the rare disease community.

“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,” said Son Rigby. “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.”

Son Rigby will become CEO of the combined organization once the merger is finished.

“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,” Martin said.