Pulmonary fibrosis (PF) is a complex lung disease and falls under a larger group of lung diseases called interstitial lung disease (ILD). Genetics, certain medications and environmental exposures are some of the known causes of PF. Most often the cause is not known, which is referred to as idiopathic pulmonary fibrosis (IPF).
In July 2025, the Lung Association, with support from the Feldman Family Foundation, launched the Pulmonary Fibrosis Lung Health Navigator program. The program provides participants with trusted lung disease education, personalized guidance and empowers participants to advocate for their lung health.
To understand the impact of the free Lung Health Navigator program, we sat down with program participants to hear about their experience. We also spoke with Lung Health Navigators, Denise and Tiffany, who shared how the program helps those who call.
Access Trusted Information
People living with PF have questions about their diagnosis, treatment options and what to expect as the disease progresses. Often, finding reliable information can be a challenge. One Lung Health Navigator program participant described finding information about PF as “incredibly frustrating” and said, “I like to find answers. When I asked my healthcare provider and searched the internet for information, I did not get a clear answer.” At the end of the program, the participant shared that both the one-on-one sessions and the program’s companion workbook, Learning to Live with Pulmonary Fibrosis, were helpful, with the workbook being easy to use and comprehensive.
Denise said, “People contact the Lung Health Navigator program because they do not know where to start to get information about their diagnosis, supplemental oxygen use or medications.” She added, “Navigators take the time to listen to their stories and questions. We are then able to provide answers, help them understand ways to partner with their healthcare team and support them during a difficult transition. People like that they are heard and feel they have someone who understands what they are going through.”
Listen to Your Concerns
Bonnie shared that she has always been a go-getter and lives an active lifestyle. As her PF progressed, routine activities such as meal planning or shopping left her tired and out of breath. During her sessions with Tiffany, they talked about the importance of setting goals for everyday activities. “I always encourage people living with PF to continue to do the activities they enjoy in alignment with their care plan.” Tiffany said. She adds, “By making small changes and utilizing the 5Ps, you can use less energy and complete your everyday activities.”
The 5Ps of energy conservation include:
- Planning out daily activities
- Using pursed lip breathing, if helpful
- Pacing and taking breaks in between activities
- Positioning yourself by sitting or standing upright
- Prioritizing activities by focusing on what is most important
By working with a Lung Health Navigator, Bonnie used the 5Ps and was able to conserve energy and do more of the activities she enjoys. She said, “after talking to Tiffany, I realized it is okay to slow down, take breaks and rest.”
Offer Encouragement, Understanding and Empathy
A Lung Health Navigator provides guidance, encouragement and helps participants navigate real-life challenges. For Bonnie, it can be difficult for other people to understand the challenges she has living with PF. She shares, “When I tell my friends I am tired or can only walk a short distance because of my lung disease, they do not always understand. Tiffany helped validate my concerns because she understands my everyday challenges.”
The Navigator program provides more than lung disease education. It empowers participants to find solutions to everyday challenges. Tiffany says, “Our program is designed so we have time to listen to your challenges living with PF and together, we explore ideas and come up with solutions. By the end of the program, participants feel more comfortable partnering with their health care team and advocating for their health.”
Whether you have questions about treatment options like medication, supplemental oxygen or need tips to conserve energy doing daily activities, a Lung Health Navigator is a free resource available to you. To talk to a Navigator, call 1-866-252-2959 or fill out the online form.
Blog last updated: September 1, 2026
