Our Leadership Team

Executive Committee

Chair

Curt Oltmans
Fulcrum Therapeutic

Vice Chair

Del Lebel
Alexion, AstraZeneca Rare Disease

Secretary

Kathy Perez
argenx

Treasurer

Chris Porter
Travere Therapeutics

Member-at-Large, Clinical / Pre-Clinical

Max Bronstein
Crinetics Pharmaceuticals

Member-at-Large, Commercial

Dianne Berry
Sarepta Therapeutics

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,
BioMarin