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Rare Disease Conference 2026 - Rare Disease Summit
March 17-19, 2026
Pre-Conference Workshops on March 16, 2026Sheraton Philadelphia Downtown | Philadelphia, PA

Marcella Debidda
President at Bionews, Inc.
Speaker

Profile

Dr. Marcella Debidda, PhD is a healthcare innovation leader with over 15 years of experience advancing research and care strategies shaped by the lived experience of patients and caregivers. She is widely recognized for developing scalable approaches to incorporate patient and caregiver expertise into research design, clinical development, and policy decision-making. Dr. Debidda has led initiatives in patient-powered trial design, recruitment and engagement strategies, and sustainable rare-disease community development across more than 50 conditions. Her career spans collaborations with pharmaceutical and biotechnology companies, advocacy organizations, and academic partners, integrating behavioral science, qualitative research, and community engagement to address unmet needs in rare and underserved populations.

Agenda Sessions

  • Unlocking Patient Voices – Transforming Treatment Journeys Through Authentic Engagement

    5:00pm