September 9-10, 2025

Rare Trials Summit

Sheraton Boston Hotel

Bringing together key stakeholders in the rare disease clinical research community to solve the unique challenges of developing therapies for rare conditions.

Early registration ends on June 30, 2025.

Steering Committee

Han C. Phan, MD

Founder & CEO, Head of Research and Principal Investigator, Rare Disease Research

Miro Pastrnak, PhD

Chief Operating Officer, Rare Disease Research

Ray Huml, DVM

Vice President, Rare Disease Strategy, Sciensus

Pat Furlong

Founding President & CEO at Parent Project Muscular Dystrophy (PPMD)

Susan Sparks, MD, PhD

Rare Disease Clinical Development Consultant, Susan Sparks Consulting

Alpa Khushalani

VP of Customer Success & Delivery, Gooseberry Research

Edward Smith, MD

Medical Director, RDR-NC & Principal Investigator, Rare Disease Research

Leila Cupersmith

Founder & CEO, Choice ClinOps

Mindy Cameron

President, AdvocacyWorks Consulting

Richie Kahn

Co-Founder & COO, Canary Advisors

Nathan Peck, MBA

Co-Founder & CEO, Cure VCP Disease, Inc.

Heather Medlin

Senior Director, CureDuchenne

Luisa Leal

Founder & CEO, The Akari Foundation

Michael Bober, MD, PhD

Former Global Clinical Lead, Achondroplasia Program, Tyra Biosciences and Former Medical Director, Skeletal Dysplasia Program, Nemours Children’s Hospital