Our Leadership Team

Executive Director

Graham Owens

Owens most recently served as the Regulatory and Oversight Counsel for the Senate Committee on Small Business and Entrepreneurship. His experience drafting and moving legislation to ensure regulations are not “one-size-fits-all” aligns with the RDCC’s mission of promoting policies that consider the unique challenges and opportunities facing rare disease innovators today.

Prior to serving in the Senate, Owens was President of Delta Agriculture where he led efforts to navigate and address key regulations and oversaw the company’s government relations portfolio, among other roles. He also previously served as the Director of Regulatory, Tax and Domestic Economic Policy for the National Association of Manufacturers (NAM). He is a graduate of the University of Virginia and the George Washington University Law School, and an active member of the District of Columbia Bar.

Executive Committee

Deirdre Parsons
Alnylam Pharmaceuticals


Deirdre Parsons
Alnylam Pharmaceuticals

Vice Chair

Michael DiMatteo
Stealth BioTherapeutics

Betsy Ricketts 
Ultragenyx Pharmaceutical


Betsy Ricketts


Chris Porter
Travere Therapeutics

Member-at-Large, Clinical / Pre-Clinical

Curt Olmans
Fulcrum Therapeutic

Member-at-Large, Commercial

Del Lebel
Alexion, AstraZeneca Rare Disease

Committee Chairs

Communications Committee Co-Chair

Molly Cameron,
Marinus Pharmaceuticals

Operations Committee Chair

Gina Cioffi,
Chiesi Global Rare Diseases

Katie Jones Alexion, AstraZeneca Rare Disease

Federal Policy Committee Co-Chair

Katie Jones
Alexion, AstraZeneca Rare Disease

Kate Segal Sarepta Therapeutics

State Policy Committee Co-Chair

Kate Segal
Sarepta Therapeutics

State Policy Committee Co-Chair

Ken Sprague,

Geoff Werth Harmony Biosciences

Federal Policy Committee Co-Chair

Geoff Werth
Harmony Biosciences