Join MassBio for the 2025 Patient Advocacy Summit on Thursday, November 6, in the MassBioHub. This event showcases the work that patient advocates do every day to ensure that patients are front and center in the drug development cycle and beyond.
Our theme: “Purpose, In Spite of Pressure” is more than a theme; it’s a call to action for everyone who has faced adversity in the healthcare system and chose to rise with purpose.
What you’ll experience: Powerful storytelling, expert panels, and interactive discussions spotlighting voices from diverse backgrounds who have turned their challenges into catalysts for change.
The keynote: Patient advocate and Fortune 500 executive Yelak Biru, alongside industry leader Fatima Scipione (Blueprint Medicines), will explore how advocacy transforms pressure into progress.
- Drawing on Yelak’s nearly 30-year journey with multiple myeloma and his leadership as CEO of the International Myeloma Foundation, the talk will highlight real-world lessons where patient perspectives have reshaped trial feasibility, improved accrual, and ensured that new therapies truly meet community needs.
Exploring newborn screening: Newborn screening is one of the most powerful tools in preventive healthcare — enabling early detection of rare and treatable conditions before symptoms appear. This panel will explore the evolving landscape of newborn screening through the lens of patient advocacy, scientific advancement, and policy development.
- This conversation will feature Mike Walsh and Lesa Brackbill from Patient Advocacy Strategies alongside Rachel Klein, genetic counselor at Boston Children’s Hospital and development director for the GUARDIAN (Genomic Uniform screening Against Rare Disease In All Newborns) study.
An update: Last year, the Dion Family shared the emotional and powerful story of their children’s diagnosis with Limb-Girdle Muscular Dystrophy (LGMD). This year, Joe and Courtney Dion return to provide an inspiring update on their journey—highlighting the progress, setbacks, and resilience that have defined the past year.
Sponsorship: Are you interested in sponsoring this inspiring and empowering event that celebrates the unwavering strength and resilience of patients, caregivers, and advocates? Contact our sponsorship team.
- Lilly, Johnson & Johnson, Massachusetts Life Sciences Center, Thermo Fisher Scientific, and Vertex.
- Our supporting sponsors: Novartis, Takeda, and Ultragenyx.