Press Releases

The Rare Disease Company Coalition Urgently Calls On the White House and Congress to Recognize the Unmet Needs of Rare Disease Patients as Drug Pricing Policy Proposals are Considered

WASHINGTON – August 12, 2021 – The Rare Disease Company Coalition, a unified voice of life science companies committed to discovering, developing and delivering rare disease treatments, today issued the following statement in response to President Joe Biden’s remarks outlining a policy proposal that would allow Medicare to negotiate the price of certain prescription drugs. 

“Ninety-three percent of rare diseases have no viable, FDA-approved treatment option. President Biden’s remarks calling on Congress to adopt price controls for drugs that have no competition in the market create the wrong incentives for further innovation to treat these devastating diseases,” said Taylor Mason, Executive Director of the Rare Disease Company Coalition. “Research and development for rare disease treatments present unique challenges and require substantially different business models than therapies for larger patient populations. We, as rare disease companies, are committed to working with Congress to address patient affordability, but a policy that seemingly targets innovators who are bringing medicines to patients with high unmet need seems unworkable and, worse yet, could mean fewer innovative medicines for the patients who need them most.”

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