Our Leadership Team

Executive Director

Stacey Frisk

Executive Committee

Chair

Curt Oltmans
Fulcrum Therapeutic

Vice Chair

Del Lebel
Alexion, AstraZeneca Rare Disease

Secretary

Kathy Perez
argenx

Treasurer

Christopher Porter
Travere Therapeutics

Member-at-Large, Clinical / Pre-Clinical

Matt Winton
Inozyme Pharma

Member-at-Large, Commercial

Dianne Berry
Sarepta Therapeutics

Committee Chairs

Communications Committee Co-Chair

Molly Cameron
Marinus Pharmaceuticals

Federal Policy Committee Co-Chair

Lisa Kahlman
Ultragenyx

Federal Policy Committee Co-Chair

Stephanie Kelly
Kyowa Kirin