Press Releases

The Rare Disease Company Coalition Announces New Members

Coalition Welcomes Atara Biotherapeutics, Chiesi Global Rare Diseases, Horizon Therapeutics, and Stealth BioTherapeutics 

WASHINGTON – June 30, 2021 – The Rare Disease Company Coalition, a unified voice of life science companies committed to discovering, developing and delivering rare disease treatments, today announced the addition of four new companies to the Coalition. With a total membership roster of 15 companies, the Coalition continues to articulate its voice on the importance of well-informed policies and regulations to enable the cost-effective and timely development and commercialization of rare disease treatments for patients. 

New members that join the Rare Disease Company Coalition include:

  • Atara Biotherapeutics
  • Chiesi Global Rare Diseases
  • Horizon Therapeutics
  • Stealth BioTherapeutics

“We are pleased to welcome four new companies to our growing Coalition,” said Taylor Mason, Executive Director of the Rare Disease Company Coalition. “The Coalition is committed to fostering greater understanding of the unique circumstances associated with the development of rare disease treatments so that legislation and policies can better support continued development of these therapies as well as patient access and reimbursement to address the incredible unmet need of rare disease patients.” 

Life science companies that develop treatments for rare disease patients face numerous challenges from clinical trial enrollment through proving meaningful endpoints given the smaller population sizes and the more limited knowledge known about the disease progression. As a result, a comparatively higher percentage of operating expenses is dedicated to research and development at these life science companies. In 2020, Rare Disease Company Coalition members invested more than $4.6 billion in research and development, representing on average more than half of their annual operating budgets. 

This necessary commitment to research and development underscores the importance of supportive policy and regulatory frameworks that can foster a greater understanding of rare diseases and recognizes the distinct considerations associated with the development of and access to rare disease treatments. 

To learn more about the Coalition and the need for informed policy and legislative discourse and actions related 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