Global Genes and RARE-X, two rare disease organizations, announced plans to merge Wednesday.
The two companies initially formed a partnership last year to enable more than 360 rare disease patient communities as part of the Global Genes Global Advocacy Alliance.
The deal, which is expected to close by the end of year, will result in RARE-X CEO Charlene Son Rigby becoming CEO of the combined company. Meanwhile, Global Genes interim CEO Craig Martin will continue in that role to support the transition before officially joining the board of directors for the new company.
The brands of both companies will remain and Walt Kowtoniuk, a venture partner at Third Rock Ventures and RARE-X board member, will serve as chairman of the board of the new company.
“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,” Son Rigby said in a statement. “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 merger is being celebrated in the rare diseases space as a natural collaboration between two like-minded nonprofit organizations.
Annemarie Armstrong, chief commercial officer of U.S. marketing at Fishawack Health, embraced the merger, saying the agency is “excited and energized” by the news.
She added that patients and researchers will benefit from global advocacy linked to data-enabled innovation in accelerating diagnoses and therapeutic development.
“A key focus for our organization is educating healthcare professionals, patients, and caregivers impacted by rare disease, connecting and empowering them to facilitate diagnosis and treatment,” Armstrong said. “We are painfully aware of the persistent unmet needs in the community of millions who can be offered no solutions for diseases that take years to even name. But we believe in turning the tide. Some of our client partners have supported both Rare X and GlobalGenes, and the merger creates a powerful force in the world of rare disease.”
