Hermansky-Pudlak syndrome (HPS) is a rare genetic disorder that causes albinism, bleeding problems, and a high risk of developing pulmonary fibrosis. However, patients with HPS provide an important population for researchers looking for biomarkers that predict the onset and progression of pulmonary fibrosis. On this ATS Breathe Easy podcast episode, expert Resat Cinar, PhD, MBA, National Institute on Alcohol Abuse and Alcoholism, and patient advocate and founder of the Hermansky-Pudlak Syndrome Network Donna Appell, RN, discuss how HPS has helped researchers better understand pulmonary fibrosis, and how research on rare diseases can generate insights that benefit much larger patient populations.

On this episode of the ATS Breathe Easy podcast, delve into journalist Terry Greene Sterling’s journey of being diagnosed with nontuberculous mycobacterial (NTM) lung disease. Greene Sterling's piece on living with NTM lung disease, funded by the Pulitzer Center, recently aired on KJZZ, the NPR affiliate in Phoenix. Host Patti Tripathi also interviews NTM specialist and Greene Sterling’s doctor, Charles Daley, MD, National Jewish Health, on the causes and symptoms of this disease. Learn how NTM is often missed in the initial screening, plus the environmental factors that can lead to infection, challenges in treatment, and the importance of ongoing research, public awareness, and clinician education.

KJZZ Arizona Public Radio: https://www.linkedin.com/showcase/kjzz-91.5-fm-phoenix/
The Pulitzer Center: https://www.linkedin.com/company/pulitzer-center/
Conecta Arizona: https://www.linkedin.com/company/conectaarizona/
Terry Greene Sterling: https://www.linkedin.com/in/terrygreenesterling/
NTM Info and Research: https://www.linkedin.com/company/ntmir/
Bronchiectasis and NTM Association: https://www.linkedin.com/company/bronchiectasis-and-ntm-association/

Lymphangioleiomyomatosis (LAM) is a rare lung disease that has become more treatable thanks to dedicated efforts from researchers and patient advocacy groups. ATS Past President Gregory Downey, MD, ATSF, National Jewish Health, discusses advances in understanding and treating LAM with host Ugo Ezema, MD. What role do patient networks play and what does the future hold for research?