Washington, D.C. — Today, Congress officially passed the reconciliation package, which includes the vital Optimizing Research Progress Hope And New Cures (ORPHAN Cures) Act, a provision that will ensure continued innovation and progress in the development of rare disease treatments.
Following its passage, Stacey Frisk, Executive Director of the Rare Disease Company Coalition (RDCC), released the following statement:
“The RDCC commends Congress for standing with the rare disease community and including the ORPHAN Cures Act in the final reconciliation package. An essential policy that will spur tremendous innovation and progress, ORPHAN Cures opens the door for continued research of promising therapies for the 95% of rare diseases that have no FDA-approved treatment.
“Approximately one in ten people are living with a rare disease, and the development of therapies for rare diseases is uniquely challenging. By ensuring that developers can allocate necessary resources towards rare disease research, the ORPHAN Cures Act has the potential to build upon the established progress facilitated by the Orphan Drug Act (ODA) over the past four decades.
“The RDCC thanks Representatives John Joyce and Don Davis, and Senators John Barrasso and Martin Heinrich for being longtime champions for the rare disease community, and applaud their commitment leading the ORPHAN Cures Act, a bill that both safeguards innovation and provides hope to individuals living with rare disease and their families. With ORPHAN Cures, we are on track to make incredible progress in rare disease research and treatment.”
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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.