Our Leadership Team

Executive Director

Stacey Frisk

Executive Committee

Chair

Del Lebel
Alexion, AstraZeneca Rare Disease

Vice Chair

Curt Oltmans
Fulcrum Therapeutic

Secretary

Kathy Perez
argenx

Treasurer

Christopher Porter
Travere Therapeutics

Member-at-Large, Clinical / Pre-Clinical

Matt Winton
Inozyme Pharma

Member-at-Large, Commercial

Diane Berry
Sarepta Therapeutics

Committee Chairs

Federal Policy Committee Co-Chair

Lisa Kahlman
Ultragenyx

Federal Policy Committee Co-Chair

Stephanie Kelly
Kyowa Kirin

Federal Policy Committee Co-Chair

Andrea Hofelich
Alexion, AstraZeneca Rare Disease

Federal Policy Committee Co-Chair

Joey Fleury
Ultragenyx