RARE Daily

Rare Disease Company Coalition Names Malakoff Executive Director

Rare Daily Staff

June 6, 2022

The industry organization the Rare Disease Company Coalition named Amanda Malakoff as its executive director effective May 31.

In her role she will be the key spokesperson for the RDCC and an advocate for companies dedicated to rare disease treatment development.

“Amanda brings a terrific blend of experience in association management and working on member companies’ legislative and regulatory issues,” said John Jackimiec, chair of the RDCC. “She will play a critical role in extending the reach of our coalition and advancing the policy priorities of the RDCC through our education and advocacy work.”

Prior to joining the RDCC, Malakoff was senior director of member relations for the National Association of Manufacturers (NAM), where she was responsible for representing the policy interests of mid-size manufacturing companies and advising industry executives on government relations strategies. Malakoff previously held client relations roles at Bloomberg Government and the Advisory Board Company, working with pharmaceutical and healthcare leaders on legislative and regulatory monitoring as well as operational best practices. She also worked on Capitol Hill in the office of Congressman John Carney, Jr. Malakoff will graduate in 2023 with a master’s in public administration from the George Washington University’s Trachtenberg School of Public Policy and Public Administration with a focus in regulatory policy.

The RDCC informs key policy stakeholders and members of Congress on the unique considerations of life science companies when developing and manufacturing rare disease therapies as well as the importance of improving patient access following U.S. Food and Drug Administration treatment approval.

“With more than 90 percent of rare diseases without a viable treatment, there is an urgent opportunity to advocate for the needs of life science companies working to deliver hope to patients,” said Malakoff.

Over the past year, the RDCC has experienced growth in both size and scope. Collectively, RDCC represents 21 company members, totaling $12.4 billion in research and development investments for rare disease treatments. The companies are united around a shared mission to improve the lives of people living with rare diseases.

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