News from PNRI
We’re excited to launch PNRI Science: Rare Disease, Real Progress–a podcast series featuring conversations recorded live at our 2025 Rare Disease Day Symposium.
This season brings together scientists, clinicians, patient advocates, and industry leaders who are working across disciplines—and across institutions—to accelerate discovery and improve outcomes for rare disease patients.
Hosted by PNRI CEO Jack Faris and his daughter, actor and producer Anna Faris, these candid conversations explore what’s possible when people unite around a shared mission: to diagnose rare diseases earlier, improve treatment options, and bring hope to families navigating the unknown.
What to Expect This Season
Each episode highlights a different perspective from the rare disease ecosystem—underscoring the urgency, expertise, and hope at the heart of this community.
Episode 1: Two Institutions, One Powerful Event
Jack Faris and Dr. Vittorio Gallo, Chief Scientific Officer at Seattle Children’s Research Institute, reflect on the partnerships, energy, and scientific breakthroughs that defined this year’s symposium. From new treatments in development to insights that will shape the future of research, they highlight how institutional collaboration can accelerate progress in rare diseases.
“Rare disease research is shaping the way almost all biomedical research will be carried forward in the future.”
Jack Faris, PhD
PNRI CEO
Episode 2: Driven by Diagnosis
Three powerful advocates—Daniel Barvin, Lindsey Topping-Scheutz, and Maddie Gillentine—share how personal experience has fueled their work to make the rare disease space more inclusive and oriented toward meaningful, measurable progress. From new legislation to groundbreaking research, they’re changing the system from the inside out.
“What is stopping [my son] Owen from having a treatment is funding—not science.” — Lindsay Topping-Scheutz
Episode 3: Voices from the Bench and the Bedside
In this episode, scientists and clinicians—from undergraduates to senior experts—share what drives their work in rare disease research. They talk about why collaboration matters, what they’ve learned from patients, and how new technologies are helping answer old questions.
“To really understand these diseases, you need to work together—clinicians, researchers, families. That’s how we make progress.” — Jessica Ayers
Episode 4: Industry Partner Perspectives
Fran Akoh of Ultragenyx and Jonathan Christie of Bruker Spatial Biology share how their work in pharma and biotech is advancing rare disease research—from investigational therapies for brittle bone disease to cutting-edge spatial technologies. They reflect on the power of partnership, purpose, and connecting lab science to real lives.
“Events like this really help pull it all together—how work in a sterile lab can end up affecting children’s lives.” — Jonathan Christie
How to Listen
New episodes launch each week in May. Follow PNRI Science: Rare Disease, Real Progress on Apple Podcasts, Spotify, or YouTube, and share it with colleagues, friends, and anyone passionate about advancing rare disease research.
Subscribe today and be part of a growing community working together to accelerate discovery, drive change, and bring hope to families affected by rare diseases.
Visit the podcast page: PNRI Science: Rare Disease, Real Progress.
Happy listening!