Giulia Pierini is a rare disease specialist with deep expertise in patient engagement and advocacy. With over five years dedicated to the rare disease field and more than 50 successful patient-focused projects across multiple rare and complex conditions, she has collaborated with global pharmaceutical and biotech companies to integrate patient insights into every stage of the product lifecycle. Her work has directly influenced clinical trial design, recruitment and retention strategies, long-term adherence, access, and post-launch planning - all critical to improving outcomes and ensuring patients receive timely access to life-altering therapies.
Giulia’s commitment to rare diseases is built on a unique combination of scientific, clinical, and strategic experience. She began her career as a researcher in cellular biotechnology and hematology at the University of Rome “La Sapienza,” then moved into marketing and sales roles at Johnson & Johnson and Bristol Myers Squibb, where she worked in neurosurgery, directly supporting patients and surgeons in the operating room.
Giulia is a frequent speaker at numerous conferences, webinars, and forums, where she shares real-world examples of successful patient involvement throughout the treatment lifecycle in rare disease.
Her mission is to ensure that the voices of patients and caregivers, especially in the often-overlooked rare disease community, are meaningfully embedded into decisions that shape research, development, and access.
Understanding patient experiences, preferences, and behaviours is critical to developing treatments that truly meet patient needs. Yet in rare diseases, capturing and applying these insights remains difficult due to small, diverse populations, delayed diagnoses, a lack of standardized methods, and limited regulatory guidance.
This panel will explore how both qualitative, and semi-quantitative patient data can inform more effective, patient-centred decisions across the product lifecycle in the rare disease space. Experts will address key barriers, such as data integration, resource constraints, and methodological gaps, and share practical strategies and real-world examples to overcome them.
Join the panel and gain a clear view of what meaningful patient experience data look like and how they can drive clinical development strategies, as well as pre-launch and market success