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Amanda Malakoff Announced as Executive Director for the Rare Disease Company Coalition

Washington, DC – June 6, 2022 – The Rare Disease Company Coalition (RDCC), a unified voice of life science companies committed to discovering, developing and delivering rare disease treatments, recently welcomed Amanda (Schechter) Malakoff as its next executive director. Malakoff started in her new role May 31, 2022, and will be a 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.  We are all looking forward to her leadership and contributions.”

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.

With a diverse and growing membership, 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 & Drug Administration (FDA) treatment approval. The Coalition believes that constructive dialogue with well-informed policymakers will lead to policies and regulations that enable continued innovation and the timely development and commercialization of treatments for the one in 10 Americans living with rare diseases, half of whom are children.

“I am thrilled to join the RDCC during this pivotal time of growth and impact, and honored to step into the position of executive director,” said Amanda Malakoff, executive director of the RDCC. “With more than 90% 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.”

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.

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

Media Contact:

Anna Stallmann