PNRI Science: Rare Disease, Real Progress
We’re back with Season 2 of our podcast PNRI Science–this time recorded live at PNRI’s 2025 Rare Disease Day symposium. It was a day full of energy, insight, and shared purpose, as scientists, clinicians, advocates, and industry leaders came together to accelerate rare disease research and treatment.
Hosted by Jack Faris, CEO of the Pacific Northwest Research Institute, and his daughter, actor and producer Anna Faris, this season captures personal stories and fresh perspectives from across the rare disease landscape. You’ll hear from rare disease families, early-career scientists, seasoned clinicians, and corporate partners, all reflecting on what drives their work—and what’s possible when people from different sectors come together.
Because in rare disease, a diagnosis isn’t the end of the story. It’s the start of something powerful.
Hosts:
Jack Faris, PhD
PNRI CEO
Anna Faris
Actor/Producer
Episode 1: Two Institutions, One Powerful Event
May 5, 2025
Episode 1 of PNRI Science: Rare Disease, Real Progress opens with a behind-the-scenes look at the 2025 Rare Disease Day Symposium, featuring a conversation between two of the event’s key organizers: PNRI CEO Dr. Jack Faris and Seattle Children’s Research Institute Chief Scientific Officer Dr. Vittorio Gallo. Together, they reflect on the collaborations that made the event possible, the breakthroughs shared on stage, and why partnership is essential to accelerating rare disease research.
Episode 2: Driven by Diagnosis
May 12, 2025
In Episode 2 of PNRI Science: Rare Disease, Real Progress, three rare disease advocates share how personal experience has fueled their work to improve research, policy, and support for families. Recorded live at PNRI’s 2025 Rare Disease Day Symposium, this conversation highlights how patient voices are helping move promising therapies forward, shape legislation, and connect researchers with the communities they aim to serve. It’s a look at the power of lived experience—and what’s possible when advocacy and science work together.
Episode 3: Voices From the Bench and the Bedside
May 19, 2025
What does it take to unravel the mysteries of rare diseases? In this episode of PNRI Science: Rare Disease, Real Progress, we spotlight the people doing just that—scientists, clinicians, and students working at the front lines of discovery. Recorded live at PNRI’s 2025 Rare Disease Day Symposium, this episode captures candid reflections from researchers and medical professionals across career stages. Whether they’re building 3D models of rare skin disorders or investigating hard-to-detect mutations, these experts show how collaboration—and listening closely to patients and families—drives meaningful progress.
Episode 4: Industry Partner Perspectives
May 27, 2025
How do discoveries in the lab become real treatments for patients? In the final episode of PNRI Science: Rare Disease, Real Progress, we talk with team members from two companies leading the way in rare disease innovation. Recorded live at PNRI’s Rare Disease Day 2025 Symposium, this episode features Fran Akoh of Ultragenyx Pharmaceutical Inc. and Jonathan Christie of Bruker Spatial Biology. They share how their work is helping turn scientific breakthroughs into real-world solutions—from developing new treatments to better understanding how rare diseases work. It’s a conversation about listening to families, supporting communities, and moving science forward—together.