September 9-10, 2025
Rare Trials Summit
Sheraton Boston Hotel
Bringing together key stakeholders in the clinical research community to accelerate the development of new rare disease therapies from average 10-12 years to under 3 years.
Steering Committee
Founder & CEO, Head of Research and Principal Investigator, Rare Disease Research
Chief Operating Officer, Rare Disease Research
Vice President, Rare Disease Strategy, Sciensus
Founding President & CEO at Parent Project Muscular Dystrophy (PPMD)
Rare Disease Clinical Development Consultant, Susan Sparks Consulting
VP of Customer Success & Delivery, Gooseberry Research
Medical Director, RDR-NC & Principal Investigator, Rare Disease Research
Founder & CEO, Choice ClinOps
President, AdvocacyWorks Consulting
Co-Founder & COO, Canary Advisors
Co-Founder & CEO, Cure VCP Disease, Inc.
Senior Director, CureDuchenne
Founder & CEO, The Akari Foundation
Former Global Clinical Lead, Tyra Biosciences and Former Medical Director, Nemours Children’s Hospital