Press Releases

Congressional Leaders Continue to Place Politics Over Rare Disease Patients with Proposed Changes to Orphan Drug Tax Credit in Build Back Better Act

Coalition Calls on Congress to Not Stall Medical Progress for Those Urgently Awaiting Rare Disease Treatment Development  

WASHINGTON – November 3, 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 condemning the proposed legislation to amend the Orphan Drug Tax Credit included in the Build Back Better Act, citing the urgent need for continued investment in research and development for the 93 percent of rare diseases that do not have a single treatment available. 

“The language released today by the House Budget Committee is disappointing. We have come to the table with solutions and options to address or alleviate potential concerns related to the Orphan Drug Tax Credit,” said Taylor Mason, Executive Director of the Rare Disease Company Coalition. “Unfortunately, the language provided today puts politics over patients. We will continue to fight to ensure continued innovation remains viable for those desperately seeking access to lifesaving treatments, and we hope those in Congress put politics aside, come to the table and do what is right.” 

For more information, please find the following resources available:

The 1983 Orphan Drug Act was passed and built upon to help incentivize investment in rare disease research and therapeutic development where there was little research being done and nearly no treatment options for those diagnosed with a rare disease. Over the last several decades, the Act has proven to be a universal success, enabling life science companies to address a growing number of unmet needs for people living with rare diseases that once were untreatable. Since implementation of the Orphan Drug Act in 1983, there have been more than 1,000 FDA approvals for rare disease treatments, with over 25 percent of those approvals occurring in the last three years. The Orphan Drug Tax Credit, already diminished in 2017 under the Tax Cut and Jobs Act from 50 percent to 25 percent, remains a critical program for sustained innovation and investment for innovator companies that exclusively focus on life-changing development programs for treatments for rare diseases. 

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