Rare Daily Staff

The Rare Disease Company Coalition, a newly formed industry organization focused on educating policymakers about the distinct considerations of life science companies operating in the rare disease space, named the members of its executive committee.

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.

The following company representatives were elected to serve as executive committee members for the inaugural year of the Coalition:

•             Chair: Betsy Ricketts, Ultragenyx Pharmaceutical

•             Vice Chair: Greg Chesmore, Acceleron Pharma

•             Secretary: Tim Kanter, Orphazyme US

•             Member-at-Large: Christine Harrison, Orchard Therapeutics

•             Member-at-Large: Deirdre Parsons, Alnylam Pharmaceuticals

•             Member-at-Large: Geoff Werth, Harmony Biosciences

In addition to named elected positions, the executive committee has representation from each of the membership classes of the coalition.

Taylor Mason, a former director of communications in the U.S. House of Representatives who works as vice president of public affairs for KPM Group in Washington, D.C., will serve as executive director of the coalition.

The coalition said it 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 resulting treatments for the one in 10 Americans living with rare diseases.

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