Summary
In this episode of the Leap Together podcast, we speak with Taleena Koch, a leading patient advocate and founder of the Breathe Support Network, one of the largest global online communities supporting individuals living with Idiopathic Pulmonary Fibrosis (IPF) and other forms of pulmonary fibrosis.
Taleena’s advocacy journey began as a caregiver to her mother, who battled IPF for six years. Confronted with a lack of clear medical guidance and patient education, Taleena turned to research, built relationships with experts, and created what would become a global lifeline for tens of thousands of pulmonary fibrosis patients and caregivers across 99 countries.
In this conversation, Taleena discusses:
- The challenges caregivers and patients face when navigating IPF
- The importance of patient-centered clinical trials and accessible research opportunities
- How advocacy can help shape better clinical outcomes and research protocols
- The evolution of lung transplant eligibility and promising developments in IPF clinical trials
- The role of online support groups for chronic lung disease in reducing isolation and increasing patient empowerment
She also shares insights from her direct collaborations with pharmaceutical companies and research sponsors to ensure clinical trial designs reflect the real-world needs of patients and caregivers—such as remote trial visits and flexible participation criteria.
If you’re a clinician, researcher, advocate, or someone impacted by pulmonary fibrosis, this episode is a must-listen. Learn how Taleena is helping drive awareness, education, and change within the rare disease and clinical research ecosystems.
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