Our Leadership Team

Executive Director

Amanda Malakoff

Amanda Malakoff serves as Executive Director for the Rare Disease Company Coalition. In this capacity, she oversees the Coalition and represents life sciences companies developing treatments for rare diseases before Congress, the Administration, and state policymakers.

Prior to joining the RDCC, Amanda was the Senior Director of Member Relations at the National Association of Manufacturers, where she represented the policy interests of mid-size manufacturing companies and assisted manufacturing leaders with driving government relations and advocacy strategies for their businesses.

Amanda previously held client relations roles at Bloomberg Government and the Advisory Board Company, advising pharmaceutical and health care leaders on legislative and regulatory monitoring and operational best practices.

Amanda is a Masters in Public Administration candidate at George Washington University’s Trachtenberg School of Public Policy and Public Administration, where she specializes in Regulatory Policy. Amanda was honored as a 2021-2022 Bryce Harlow Foundation Fellow, which recognizes rising government affairs professionals pursuing graduate-level education. Amanda holds a bachelor’s degree from the University of Delaware in political science and political communication.

Executive Committee

Deirdre Parsons
Alnylam Pharmaceuticals


Deirdre Parsons
Alnylam Pharmaceuticals

Vice Chair

Michael DiMatteo
Stealth BioTherapeutics

Betsy Ricketts 
Ultragenyx Pharmaceutical


Betsy Ricketts


Brent Fisk
Horizon 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

Communications Committee Co-Chair

Jessi Rennekamp
Agios Pharmaceuticals

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