Gain a better understanding of rare disease clinical trials by listening to patient advocates and health care providers, learn how to be prepared for when the trial ends, and hear from those who chose to be advocates in this 3 part webinar series.
Part 1 Panelists
Moderator
Christian Rubio
VP of Strategic Advancement,
Global Genes
Panelist
Dr. Jahannaz Dastgir DO
Director, Pediatric Neuromuscular Program,
Goryeb Children’s Hospital
Panelist
Melanie Havert
Project Manager,
Rare Patient Voice, LLC
Panelist
Jenn McNary
Founder & Patient Advocate,
One Rare
Presenter
Stephanie Loomer
Project Manager,
CISCRP
Part 2 Panelists
Marsha Lanes,
Genetic Counselor/
Medical Editor,
NORD
Dr. Tracy Dixon-Salazar,
Executive Director,
Lennox-Gastaut
Syndrome Foundation
Richie Kahn, MPH
Senior Director,
Patient Engagement,
Medable Inc.
Dana Holinka,
Operating Board Member,
TSC Alliance
Part 3 Panelists
Britta Dornan
EveryLife Foundation for Rare Diseases
Ryan Colburn
Patient Advocate
(Pompe disease)
Dr. Kim Stephens
Project Alive
Marc Yale
International Pemphigus & Pemphigoid Foundation
Companion Content
Part 1:
Part 2:
Part 3:
