Advocacy on Capitol Hill: How Patient Voices Shape Policy

Hope, Resilience, and Rare Disease: How Dan Lier’s Mindset Shaped His Recovery

Guest: Dan Lier, Amyloidosis patient and founder of Elevate Amyloidosis and co-author, The Rare Disease Playbook On this episode of PH Insights, host Jolie Lizana speaks with Dan Lier, a rare disease patient and advocate. Lier shares his inspiring journey navigating an amyloidosis diagnosis and discusses how changing his mindset and choosing positive thoughts aided in overcoming the challenges of living with a rare disease. Lizana also makes the connection for those living with PH and how many, regardless of diagnosis, can benefit from resilience tools and other lessons shared in this thoughtful conversation. Find support with PHA [https://phassociation.org/living-with-ph/managing-your-health/coping/]  Connect with support in a way that fits your needs.   * For 24-hour support for mental health or substance abuse issues, call 988, a national hotline that provides support by call, text or chat.   * Call PHA’s Support Line: 800-748-727. * Connect with PHA’s support programs. [https://phassociation.org/living-with-ph/support/] * Find a PHA Peer Mentor [https://phassociation.org/living-with-ph/support/peer-mentors/]

Living with Sjögren’s-related PH: Dawn Grandell’s Story

Guest: Dawn Grandell, PAH and Sjögren’s patient, PHA peer mentor and support group leader Sjögren’s is an autoimmune disease that can lead to PH due to damage caused to the lung tissue. On this episode of PH Insights, peer mentor and support group leader Dawn Grandell shares her inspiring journey of living with pulmonary arterial hypertension and Sjögren's while discussing the importance of advocacy, support, and finding community. Read more about Pulmonary Hypertension Related to Sjögren’s [https://phassociation.org/pulmonary-hypertension/what-is-ph/related-conditions/sjogrens/] by visiting the Pulmonary Hypertension Association’s Website. To find a peer mentor, visit PHA’s Peer Mentor  [https://phassociation.org/living-with-ph/support/peer-mentors/]page. Join Dawn at Rock the PHight [https://phassociation.org/events-calendar/month/2026-06/], an evening of music, dancing, and PH awareness, in Shorewood, Illinois on June 27. Details are on the event calendar on PHA’s website.

Advocacy on Capitol Hill: How Patient Voices Shape Policy

Host: Jolie Lizana, PAH patient and advocate Guests: Matt Granato, LL.M., MBA, PHA's President and CEO; Kevin Heyen, PHA's Vice President, Development & Industry Relations; Jaeger Spratt, MSW, PHA’s advocacy and treatment access program manager; Eric Borstein, PAH patient and advocate; and Roopa Radhakrishnan, PH patient and advocate On this episode, the Pulmonary Hypertension Association takes you inside the rooms where real change begins. Get a behind-the-scenes look at the meetings where pulmonary hypertension patients’ and health care providers’ stories are heard, valued, and carry real weight. You will learn how advocacy meetings work, hear directly from individuals who traveled to Capitol Hill to speak on behalf of the PH community, and understand the impact their voices have in shaping policy. Most importantly, this episode breaks down how PHA can support you in advocating from wherever you are. Whether you are new to advocacy or already involved, you will see just how powerful your voice is and why it matters. Discover upcoming advocacy volunteer opportunities by subscribing to the monthly Advocacy Action Alert [https://phassociation.org/pha-news/recent/newsletters/subscribe/] newsletter.

Navigating Sleep-Disordered Breathing with Pulmonary Hypertension

Host: Jolie Lizana, PAH patient and advocate, PHA’s Patient and Caregiver Education Committee member Guest: Mary Jo Farmer, MD, PhD; board certified pulmonary, critical care and sleep medicine physician, Mass General Brigham- Salem Hospital, associate professor of medicine at Tufts University School of Medicine Sleep-disordered breathing is far more common in pulmonary hypertension than most people may realize. On this episode of PH Insights, host Jolie Lizana sits down with a pulmonary, critical care, and sleep medicine specialist, Mary Jo Farmer, to unpack how nighttime oxygen drops, sleep apnea, and hypoventilation can impact your pulmonary vascular health and right heart function. Together, they discuss how clinicians diagnose and classify sleep‑disordered breathing, what happens in the body when sleep is disrupted, and how targeted treatment strategies can help. Visit Pulmonary Hypertension Related to Sleep Apnea [https://phassociation.org/pulmonary-hypertension/what-is-ph/related-conditions/sleep-apnea/]to learn more.     Register [https://conference.phassociation.org/registration.cfm] for the PHA 2026 International PH Conference and Scientific Sessions [https://conference.phassociation.org/index.cfm] to hear more from Dr. Farmer in, “The Impact of Treating Sleep Apnea and Hypoxia on Pulmonary Arterial Hypertension Management [https://conference.phassociation.org/scientific_sessions.cfm].”   PHA 2026 Scientific Sessions brings together health care professionals from all disciplines to earn continuing education credit, network with fellow pulmonary hypertension professionals, learn about the latest research and discuss best practices for PH treatme

Decoding Disparities: What Drives PAH Outcomes in Hispanic Populations

Host: Meghan M. Cirulis, MD, MS, medical director, Intermountain Health Pulmonary Hypertension Center, assistant professor, pulmonary and critical care medicine, Intermountain Medical Center, adjunct assistant professor, University of Utah Pulmonary and Critical Care. Guest: Roberto Bernardo, MD, MS, ATSF, clinical assistant professor, Adult Pulmonary Hypertension Service, Vera Moulton Wall Center for Pulmonary Vascular Disease, Division of Pulmonary, Allergy & Critical Care Medicine, Stanford University School of Medicine   On this episode, host Meghan Cirulis speaks with clinician and researcher Roberto Bernardo about his work exploring ethnicity and social determinants of health for those living with pulmonary arterial hypertension in the Hispanic community. Bernardo discusses underlying disparities and offers insight into ways to improve quality of life for patients with limited access to care.  Bernardo also shares how PHA’s Pulmonary Hypertension Association Registry [https://phassociation.org/ph-professionals/accredited-care-centers/phar-research/] provided the data needed for his study.