Press Releases

The Rare Disease Company Coalition Announces 2022 Executive Committee and Leadership Appointments

WASHINGTON – February 3, 2022 – The Rare Disease Company Coalition, a unified voice of life science companies committed to discovering, developing and delivering rare disease treatments, today announced appointments to its Executive Committee for 2022, serving a one-year term.

With a diverse and rapidly growing membership, the Coalition informs key policy stakeholders and members of Congress on the unique considerations of life science companies when developing and manufacturing rare disease therapies as well as the opportunities for improving patient access following FDA treatment approval. The Coalition believes that constructive dialogue with well-informed policymakers will lead to policies and regulations that enable continued innovation and the cost-effective and timely development and commercialization of treatments for the one in 10 Americans living with rare diseases, half of whom are children.

The Coalition is governed by a Board of Directors and supported by an Executive Committee that provides oversight of the day-to-day operations of the Coalition. In addition to named elected positions, the Executive Committee has representation from both commercial and pre-commercial Coalition members. 

The following company representatives were elected by the Board of Directors to serve as Executive Committee members for the 2022 calendar year of the Coalition:

  • Chair: John Jackimiec, Aeglea BioTherapeutics
  • Vice Chair: Deirdre Parsons, Alnylam Pharmaceuticals
  • Secretary: Betsy Ricketts, Ultragenyx
  • Member-at-Large: Diane Berry, Sarepta Therapeutics
  • Member-at-Large: Christine Harrison, Orchard Therapeutics

“I am honored to represent the Rare Disease Company Coalition as we embark on our second year and build on our successes from 2021,” said John Jackimiec, newly appointed Chair of the Rare Disease Company Coalition. “In 2022, the Coalition can maximize our impact through an increase in membership, improving our reach at both the national and state level to ensure that national- and state-level policies support continued innovation for the millions of patients and families affected by rare diseases.”

In addition, the following individuals have been appointed Committee Chairs for 2022: 

  • Federal Policy Committee Co-Chairs: Katie Jones, Alexion Pharmaceuticals; Geoff Werth, Harmony Biosciences 
  • State Policy Committee Chair: Kate Segal, Sarepta Therapeutics
  • Communications Committee Chair: Jessi Rennekamp, Agios Pharmaceuticals
  • Operations Committee Chair: Bruce Bloom, Healx

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