Our Leadership Team

Executive Committee

Deirdre Parsons
Alnylam Pharmaceuticals

Chair

Deirdre Parsons
Alnylam Pharmaceuticals

Vice Chair

Michael DiMatteo
Stealth BioTherapeutics

Betsy Ricketts
Ultragenyx Pharmaceutical

Secretary

Betsy Ricketts
Ultragenyx

Treasurer

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,
BioMarin

Geoff Werth Harmony Biosciences

Federal Policy Committee Co-Chair

Geoff Werth
Harmony Biosciences