Washington, D.C. — In recognition of Rare Disease Week, U.S. Representative Josh Gottheimer (NJ-5) announced a bipartisan legislative package aimed at accelerating research, strengthening clinical trials, restoring key incentives for drug development and ensuring patients have access to cutting-edge treatments. In response, Rare Disease Company Coalition (RDCC) Executive Director Stacey Frisk released the following statement:
“The Rare Disease Company Coalition (RDCC) applauds Congressman Gottheimer for his leadership in advancing policies to support people living with rare diseases and for shining a spotlight on a suite of bipartisan bills during Rare Disease Week.
“We appreciate Rep. Gottheimer’s reintroduction of Leo’s Law, which would extend exclusivity for rare disease clinical trials that were stalled during the COVID-19 pandemic, ensuring promising treatments can continue progressing toward becoming available for patients.
“RDCC also thanks the Problem Solvers Caucus for endorsing H.R. 1414, Cameron’s Law — bipartisan legislation to restore the Orphan Drug Tax Credit (ODTC) to its original 50 percent. For RDCC member companies developing life-changing rare disease treatments, reducing barriers to drug development and encouraging upfront investment is essential. Cameron’s Law will restore an integral component of the rare disease ecosystem, making it more economically feasible to develop these treatments while providing the certainty needed to sustain long-term investment.”
“RDCC urges Congress to advance Cameron’s Law in the 119th Congress to help ensure continued investment in rare disease research and development and bring more treatments to patients and families who need them.”
For more information, please see Congressman Gottheimer’s full statement here.
To learn more about the RDCC or speak to Executive Director Stacey Frisk, email rdcc@berlinrosen.com.
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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.