RARE Daily

Craig Martin Takes the Helm of Global Genes as Interim CEO

October 22, 2020

It was about ten years ago that Craig Martin first attended the inaugural Global Genes RARE Patient Advocacy Summit and became involved with the organization. He subsequently took on the role of co-chair of the organization’s Corporate Alliance and joined its board of directors.

Last week Martin, who has a wealth of executive management and life sciences industry knowledge, deepened his relationship with the organization as he became interim CEO.

He replaces Kimberly Haugstead, who resigned effective October 15. Under Haugstead, who was in the post for a little more than a year, the organization increased participation in its Foundation Alliance and support for other key programs, brought in a number of key hires, and distributed more than $500,000 through the RARE Impact Grant for Continuity and Care during the COVID-19 pandemic.

Now, Martin will work to build the organization. He said from his first exposure to Global Genes he was impressed with how it viewed its mission. He sees what the organization does as both needed and unique by seeking to work with everyone from individual patients early in their journey and small rare disease organizations figuring out what they need to do to advance their causes, to more mature organizations seeking to have a bigger impact.

“It seemed to me that that combination was compelling and needed in rare disease,” he said. “It is a part of the model that I’ve always felt was central to Global Genes and to its mission.”

As Martin addressed the opportunities for Global Genes, he said the organization does not want to duplicate what others are already doing well. For that reason, he said that the organization has not focused on such things as policy.

In the near-term, he said he expects to see a greater emphasis on diversity, equity, and inclusion issues; efforts to shorten the diagnostic odyssey for undiagnosed patients, and provide more to help people seeking access to clinical trials find ones that are appropriate for them. He also plans to focus on capacity building and community development, and the organization’s RARE Concierge program, which works to connect undiagnosed and newly diagnosed rare disease patients to resources.

“Even as we look ahead longer-term to bring in another CEO,” he said, “my goal is that when we get to that point, the organization is in great shape and there are lots of opportunities for growth ahead so they can step in and not have to worry about fixing things, but rather can focus on where else we can have a bigger impact.”

Nicole Boice, founder and board member of Global Genes said that Martin is an “extraordinary leader” who brings a depth of experience from the world of life sciences and the rare disease ecosystem. She said he will build and grow the organization to realize its full potential.

“He has a breadth of experience and knowledge about things that impact the rare disease ecosystem from around drug development and the importance of patients as part of that process,” she said. “He’s been an extraordinary volunteer. Over the last decade he has supported the Global Genes organization, helping with strategy, as a member of the board of directors, and as the chairman of the Corporate Alliance, which works directly with a lot of the important partners and funders of Global Genes.”

Martin has an extensive background in strategy consulting and advocacy in life sciences, biotech, health technology, and healthcare. He serves on the board of the rare cancer patient advocacy organization Fibrolamellar Cancer Foundation, and is also a co-founder of RARE-X, which is creating a collaborative platform for global rare disease data sharing.

While he brings a high level of management, strategy, and communications to the role, he said his goal is to maintain Global Genes’ more intimate and high touch feel, which the organization has always had.

“That’s always distinguished Global Genes as an organization,” he said. “I can be helpful in trying to identify ways that we can scale our impact given the increasing global need that’s out there and leverage technologies to better connect and enable different communities around the globe to be more effective on their own behalf and to work together to drive progress in rare disease.”

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