Press Releases

The Rare Disease Company Coalition Applauds Introduction of Cures 2.0 and Encourages Congress to Account for the Unique Circumstances in Rare Disease Treatment Development

WASHINGTON – June 22, 2021 – The Rare Disease Company Coalition, a unified voice of life science companies committed to discovering, developing and delivering rare disease treatments, commented on the release of “Cures 2.0” draft bipartisan legislation by U.S. Representatives Diana DeGette (D-CO) and Fred Upton (R-MI) and welcomes the opportunity to further engage and provide feedback as the legislation is considered.  

“The Rare Disease Company Coalition applauds Congresswoman DeGette and Congressman Upton on recognizing the importance of building upon their landmark, bipartisan 21st Century Cures Act and continuing to advance legislation that aims to better deliver modern treatments and cures to the countless Americans seeking options,” said Betsy Ricketts, Chair of the Rare Disease Company Coalition. “As Congress now considers ‘Cures 2.0’ and other legislative and regulatory proposals, we look forward to further engaging and providing feedback on the unique challenges in the development of rare disease treatments so that forthcoming legislation and policies facilitate and do not inadvertently harm the ability to successfully provide treatments for these medically underserved patient populations, now and in the future.”

The Rare Disease Company Coalition was established in 2021 to help advance policies and regulations that enable the cost-effective and timely development and commercialization of rare disease treatments by educating policymakers on the distinct considerations of life science companies operating in the rare disease space. To learn more about the Coalition and its commitment to rare disease treatment development and commercialization, please visit


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 in order for critical innovation to continue. 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