Press Releases

Graham Owens Announced as Executive Director of the Rare Disease Company Coalition

An Experienced DC Regulatory and Policy Counsel, Owens Brings Expertise on Navigating Rare Disease Policy Landscape

Washington, DC – November 15, 2023 – The Rare Disease Company Coalition (RDCC) recently named Graham Owens as Executive Director of the Coalition. Owens joins the RDCC at a pivotal time as the RDCC continues to advance a stronger and more stable policy environment for rare diseases.  The RDCC provides a unified voice for life science companies committed to discovering, developing, and delivering rare disease treatments

“I am inspired by the great progress the Coalition has made in advancing rare disease policy and I am excited to further address the needs of RDCC companies and the patients they serve,” said Graham Owens, Executive Director of the RDCC. “As the rare disease community faces policy and regulatory uncertainty, , the RDCC plays a crucial role in advocating for investment in and support of rare disease drug development. This support ensures rare disease companies can continue to develop critical treatments for the 95% of rare diseases without an FDA-approved treatment.”

“As Chair, I am immensely excited to welcome Graham as Executive Director of the RDCC,” said Deirdre Parsons, Board Chair of the RDCC. “Graham’s professional background and energy will further advance the Coalition as the leading voice for rare disease innovators in 2024 and beyond.” 

Owens most recently served as the Regulatory and Oversight Counsel for the Senate Committee on Small Business and Entrepreneurship. His experience drafting and moving legislation to ensure regulations are not “one-size-fits-all” aligns with the RDCC’s mission of promoting policies that consider the unique challenges and opportunities facing rare disease innovators today. Prior to serving in the Senate, Owens was President of Delta Agriculture where he led efforts to navigate and address key regulations and oversaw the company’s government relations portfolio, among other roles. He also previously served as the Director of Regulatory, Tax and Domestic Economic Policy for the National Association of Manufacturers (NAM). He is a graduate of the University of Virginia and the George Washington University Law School, and an active member of the District of Columbia Bar.

About the Rare Disease Company Coalition (RDCC)

Founded in May 2021, the Rare Disease Company Coalition represents life science companies committed to discovering, developing and delivering rare disease treatments for the patients we serve. As an education and advocacy-focused coalition of companies, our goal is to inform policymakers of the unique challenges and promises of rare disease drug discovery, development and manufacturing for small population sizes so that critical innovation can continue and positive changes can be enacted for the rare disease community. To achieve this goal, we will use our unified voice to advocate for long-term, consistent, equitable and sustainable government policies that enable life science companies to continue to bring hope and provide access to approved treatments to people living with rare diseases. For more information, please visit