RARE Daily

Global Genes and RARE-X to Merge to Enable Next-Generation Patient Advocates

October 12, 2022

The rare disease patient advocacy organization Global Genes and the rare disease patient data sharing platform RARE-X said that the boards of directors of the two organizations have signed a definitive agreement to merge, a move they say will provide next-generation rare disease advocates the tools and resources they need to accelerate their drive for treatments.

Photo: Charlene Son Rigby, CEO of RARE-X

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, Charlene Son Rigby, RARE-X CEO, 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.

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. Global Genes is publisher of Rare Daily.

“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.”

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, is expanding rapidly with more than 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.

“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.”

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. The organizations said they will now be 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 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,” said Luke Rosen, Founder, KIF1a.org. “The result of this partnership is two forces coming together to create something nobody thought was possible.”

Author: Rare Daily Staff

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