Rare Disease Advocacy World USA

Highlighting the industry game changers that are accelerating rare disease research & drug developement


Join them & 1,200+ attendees this April to discuss the most pressing challenges and opportunities to bring rare disease therapies to patients faster.






Who attends?

Pharma, biotechs
  • Chief Patient Officer
  • VP Patient Advocacy
  • Medical Affairs
Patient Engagement Patient Advocacy Groups

Topic areas include:


  • how to collaborate with industry to advance rare disease research
  • how to leverage funding to support rare disease research efforts
  • how to educate the patient community about newly approved and advanced therapies
  • how to shorten the diagnostic discovery and connect patients to research and treatments
  • how to continue encouraging research and investment in rare disease after approval

2018 Rare Disease Advocacy speakers included:

Peter Saltonstall 
President and Chief Executive Officer

Yann Le Cam 
Chief Executive Officer

Preston Campbell 

Pamela Tenaerts 
Executive Director

Carole Ben-Maimon 
President & Chief Executive Officer

Jayne Gershkowitz 
Senior Vice President & Chief Patient Advocate 

Christopher Austin

Steven Kamisky  
Chief Scientific Officer

Tricia Mullins   
Board Member

Kenneth Hobby 

Meghan Miller  
Project Leader/Discovery Scientist, Rare Diseases

Ron Bartek