Press Releases

Stacey Frisk Named as New Executive Director of the Rare Disease Company Coalition

Former Director of Regulatory Strategy at Sarepta Therapeutics, Frisk Brings Expertise on Rare Disease Policy 

Washington, DC – The Rare Disease Company Coalition (RDCC) on Wednesday announced Stacey Frisk as Executive Director of the Coalition. Joining the RDCC from rare disease company Sarepta Therapeutics, Stacey has spent the past decade steeped in the issues that matter most to rare disease companies. She will help to further advance the RDCC’s mission to stimulate development of and access to rare disease treatments. The RDCC provides a unified voice for life science companies committed to discovering, developing, and delivering rare disease treatments.

“The RDCC plays a pivotal role in advancing policy that supports research and development of rare disease treatments, and I am thrilled to be joining them in furthering their mission to bring life-changing therapies for patients,” said Stacey Frisk, Executive Director of the RDCC. “I’m excited to continue my advocacy for policies that take into account the challenges associated with rare disease drug development and provide the needed flexibilities and incentives to support continued innovation. With only 5 percent of rare diseases having an FDA-approved treatment, the RDCC’s work is more important than ever.”

While at Sarepta Therapeutics, Stacey played a crucial role in developing and executing regulatory strategies and advancing policies for rare disease programs. Through her experience developing and advancing legislation to address key issues impacting rare disease development and approval, Stacey has a strong understanding of the rare disease policy landscape and understands both its challenges and opportunities. Prior to her role at Sarepta, Stacey served in government affairs and policy roles at the Cystic Fibrosis Foundation and Cigna. She is a graduate of Boston University.


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