CAMBRIDGE, Mass. — Researchers, patient advocates, biotechnology executives, and state policymakers will gather on Wednesday, February 25, 2026, from 10:00 a.m. to 2:00 p.m. at the MassBioHub for MassBio’s annual Rare Disease Day forum, focusing on advances in rare disease research alongside persistent challenges in diagnosis, access to care, and treatment development.
The forum is intended to bring together stakeholders from across the rare disease ecosystem to examine how scientific innovation is reshaping the outlook for patients with uncommon and often overlooked conditions. While progress in genomics, neuroscience, and precision medicine has accelerated in recent years, organizers say many patients continue to face long diagnostic delays, limited therapeutic options, and gaps in insurance coverage.
Medical and research perspectives at the event will include Anne L. Angiolillo, MD, medical director of hematologic oncology at Servier; Christine Duncan, MD, senior physician at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center; Christie Higuera, program director at the Center for Rare Neurological Diseases at Massachusetts General Hospital; Dr. Peter Marks, senior vice president for molecule development and head of infectious disease at Eli Lilly & Company; Sophie Parmentier-Batteur, neuroscience Cambridge site head for biomedical research at Novartis; and Dr. Dylan Tierney, chair of the Rare Disease Advisory Council.
Industry leaders participating in the forum include Linda Armstrong, global head of translational medicine and discovery profiling and head of global health at Novartis; Samantha Gilman, director of public affairs and policy at Servier; Uthra Sundaram, senior vice president and head of U.S. plasma-derived therapies at Takeda; and Laura Hamilton, chief business officer at MassBio.
Public policy issues related to rare disease research and patient access will be addressed by Sen. Paul Feeney of the Bristol and Norfolk District and Rep. Jay Livingstone of the 8th Suffolk District. Both lawmakers are expected to discuss how state policy can support innovation while improving access to diagnostics and treatments for patients with rare conditions.
Organizers say the forum is designed to encourage collaboration among industry, clinicians, researchers, and advocacy groups, while keeping attention focused on the unmet needs of patients and families affected by rare diseases.
