American Lung Association Campaign Shines Light on the Long Road to a PAH Diagnosis; Raises Awareness About Rare Lung Disease

CHICAGO, Nov. 4, 2026 — Today, the American Lung Association is sharing information about its national campaign to help families facing pulmonary arterial hypertension (PAH) and raise awareness about the disease during Pulmonary Hypertension Awareness Month.

PAH is a rare, underdiagnosed and progressive lung disease—only 500 to 1,000 new cases of PAH are diagnosed in the U.S. each year. PAH is a form of pulmonary hypertension (PH), which is a serious condition that causes abnormally high pressure in the blood vessels between the lungs and the heart. For people with PAH, the disease causes tiny arteries in the lungs to become thickened and narrowed. PAH is most common in women, ages 30 to 60, but can also occur in men and people of all ages, including children.

"Our campaign was informed by social listening to understand trends and conversations happening online and in the pulmonary arterial hypertension community and from the experiences of people living with PAH. While we know this disease is underdiagnosed, our research showed the incredibly lengthy and frustrating journey that too many people experience before being diagnosed with PAH," said Harold Wimmer, President and CEO of the American Lung Association. "This underscores the urgent need for more awareness about this disease, not only for people facing respiratory symptoms, but also for healthcare providers to help identify PAH in their patients earlier."

As a part of the campaign, the Lung Association featured Jenna's journey from being too breathless to climb a flight of stairs, to an exhausting diagnosis process to finding a specialist and getting back to her love of traveling the world. It also features Jen's story, which included a misdiagnosis of asthma that led to frightening symptoms. Following the PAH diagnosis, Jen talks about the importance of support communities for people living with PAH.

"In many ways, the PAH community has turned something that once felt isolating into something deeply anchoring. It's a reminder that even in the hardest moments, we are never walking this path alone," said Jen.

There is no cure for PAH; however, numerous treatments are available to control symptoms and improve quality of life. With appropriate treatment, the goal is for a person to live a normal, active life. For people with PAH, a specialist will help create a customized treatment plan. In addition to specialized medications, the plan may include pulmonary rehabilitation and supportive care options. Lifestyle changes, including a modified diet, exercise and avoiding tobacco smoke, can help minimize symptoms.

Through this campaign, with support from Merck, the American Lung Association is implementing strategies learned from listening to the PAH community to develop critical resources and support, including:

• PH Basics: A new free online class to empower people to better understand the disease, new and worsening symptoms, treatment options and the importance of a treatment plan.
• Lung Helpline: People with questions can call the free Lung HelpLine to connect with nurses and other experts who can provide answers about treatment options, support, accessing financial assistance and other resources.
• Educational Resources: Trusted, evidence-based information, including guidance on how PAH is diagnosed, treatment options and managing life with the disease. 

For more information, visit Lung.org/PAH.

CONTACT: Jill Dale | American Lung Association
P: 312-940-7001 E: [email protected] 

SOURCE American Lung Association