Washington, DC – The Rare Disease Company Coalition (RDCC), representing 24 life science companies committed to discovering, developing, and delivering treatments for individuals living with a rare disease, today issued the following statement from RDCC Executive Director Stacey Frisk in response to FDA’s announcement of a plan to establish the Rare Disease Innovation Hub (the Hub):
“At this critical moment for the future of rare disease research and development, the RDCC commends Dr. Patrizia Cavazzoni and Dr. Peter Marks and their colleagues at the FDA for their leadership in advancing a new model for coordination and collaboration to spur the development of new innovations for people with rare disease.
The RDCC looks forward to working with the FDA as it implements the Rare Disease Innovation Hub. With so much at stake for the 1 in 10 Americans living with a rare disease, it is critical that the FDA partner with a wide range of rare disease stakeholders to realize the full potential of the Hub’s vision. We are incredibly optimistic that, alongside stakeholders across the rare disease community, the FDA’s new Hub will increase collaboration with patients, leverage cross-agency expertise and advance regulatory science on behalf of individuals living with rare diseases.”
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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 rarecoalition.com