World Pulmonary Hypertension Day champions hope in clinical trials
Advocates unite on May 5 to support PH research and raise awareness
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Advocates worldwide are gearing up for World Pulmonary Hypertension Day on May 5, focusing this year on the critical role of clinical research. Led by PHA Europe, the annual event seeks to raise awareness and improve the lives of those living with pulmonary hypertension (PH), a condition characterized by high blood pressure in the lung vessels.
While last year’s event emphasized early diagnosis, the 2026 theme, “Hope in Every Trial,” highlights how human studies drive medical breakthroughs. These trials serve as the gold standard for testing new therapies and provide insights into disease biology that laboratory models cannot replicate.
“While treatments have improved, there is still much to learn about the condition and how to expand options for people living with PH,” the Pulmonary Hypertension Association (PHA) states on its website. “Clinical trials play an important role in that progress by helping researchers better understand PH, evaluate potential therapies and improve care over time.”
The importance of clinical research
PH refers to elevated pressure in the vessels that carry blood through the lungs, which puts abnormal strain on the heart. Because the disease is complex, ongoing research is the only pathway toward more effective management.
“Clinical trials will continue to be essential to expanding knowledge, improving care and creating a better future for everyone affected by this condition,” Matt Granato, president and CEO of the PHA, said in a press release.
To support the cause, the PHA and other advocacy organizations are encouraging community members to spread the word on social media using the hashtags #HopeInEveryTrial and #WorldPHDay2026. A digital toolkit is available to help supporters facilitate online activism and education.
Advocates emphasize that public education is vital because PH is often an “invisible” illness that remains widely misunderstood.
“It’s important now more than ever for people [to] raise awareness. We need to keep advocating for research and innovations for the pulmonary hypertension community,” Sherry Rouse, a patient advocate, said in a recent episode of the phaware podcast.
Kevin Allen, another patient advocate, echoed this sentiment in a different episode, noting the distinct lack of public information. “There’s no reason not to push awareness for [pulmonary arterial hypertension],” Allen said. “People cannot see it, so they don’t really have an idea of it.”
Beyond the clinical aspects, many advocates join the movement to combat the isolation that often accompanies a chronic diagnosis.
“This disease has taught me how to be more humble, how to be more grateful, how to take each day as the gift that it is, and not to be too hard on myself,” Lenise Whitley said. “I became a patient advocate because I know the loneliness of the disease.”
Community events and fundraising
As part of the lead-up to World PH Day, the PHA is hosting two in-person fundraising walks on May 2, one in California and one in Virginia. Other fundraising walks in Massachusetts and Ohio are scheduled for May and later this year. On the official day of the event, May 5, a PAH support group will hold a virtual meeting to connect patients globally.
Scientific education also continues on May 5 with a webinar from the U.K.-based charity The Pulmonary Vascular Research Institute. Cheng Jun Hu, PhD, an associate professor at the University of Colorado, will discuss how low oxygen levels at high altitudes can contribute to the development of PH.
In addition to advancing research, a major goal of the day is to ensure that no one faces the disease alone. The global event provides a platform for patients to find solace in shared struggles.
“Living with pulmonary hypertension often means fighting an invisible battle — just because someone looks okay doesn’t mean they feel okay,” Katie Werner, community outreach and marketing director at Team PHenomenal Hope, told Pulmonary Hypertension News. “The energy it takes to do everyday things can be overwhelming, and what helps most isn’t fixing it, but showing patience, understanding, and simply being there.”
