According to the American Lung Association, a new clinician-led education initiative provides patients diagnosed with pulmonary fibrosis and their caregivers with personalized guidance from registered nurses and respiratory therapists to help manage progressive lung scarring. Launched in July 2025 with support from the Feldman Family Foundation, the “Learning to Live with PF” program offers free resources, including a 50-page workbook and one-on-one consultations, to address treatment options, second opinions, and insurance coverage.
How Lung Health Navigators Support Pulmonary Fibrosis Patients
A central component of the program is direct access to Lung Health Navigators, who provide guidance via phone calls, live online chat, and video calls in both English and Spanish. According to American Lung Association President and CEO Harold Wimmer, these healthcare professionals serve as trusted messengers to answer difficult questions regarding self-management that patients might hesitate to bring up with their primary providers. Program participant Bonnie, who maintains an active lifestyle, noted that working with navigator Tiffany helped validate her daily challenges and taught her how to manage fatigue. Tiffany explained that navigators help participants explore real-life solutions, such as implementing the 5Ps of energy conservation—planning, pursed-lip breathing, pacing, positioning, and prioritizing—to make everyday tasks more manageable.
Free Educational Workbooks and Peer Networks
Participants in the initiative receive a free 50-page workbook titled Learning to Live with Pulmonary Fibrosis, which is mailed directly to homes in either English or Spanish, according to the American Lung Association. The publication offers practical strategies on medical management, clinician communication, symptom treatment, nutrition, physical activity, and social support. Additionally, enrollees gain entry to the Patient and Caregiver Network, a nationwide community that connects individuals with peer support and emerging research opportunities, such as clinical trials. Mitch Feldman, president of the Feldman Family Foundation, stated that the workbook provides vital information and comfort to families navigating the disease.
Did you know? Pulmonary fibrosis encompasses more than 200 distinct types. While known causes include environmental exposures, certain medications, and genetic factors, the most common form—idiopathic pulmonary fibrosis (IPF)—has no known cause, according to the American Lung Association.
Understanding Progressive Lung Scarring and Management Strategies
Pulmonary fibrosis is characterized by lung tissue scarring that makes breathing increasingly difficult over time. Because the condition is progressive, ongoing clinical monitoring with healthcare providers is essential, according to the American Lung Association. Standard management strategies involve medications, oxygen therapy, and pulmonary rehabilitation, while lung transplantation may be considered for severe cases. Lifestyle interventions like proper nutrition and stress management also assist with symptom control.
Pro Tip: When searching for reliable medical information proves frustrating, utilize clinician-led navigation programs to help clarify supplemental oxygen use, medication schedules, and partnership strategies with your healthcare team, as advised by navigator Denise.
Frequently Asked Questions About Pulmonary Fibrosis Support
What is a Lung Health Navigator?
According to the American Lung Association, Lung Health Navigators are registered nurses and respiratory therapists who provide free, one-on-one education, guidance, and support to individuals living with lung diseases.
How can I access the Learning to Live with PF workbook?
The free 50-page workbook is available in English or Spanish through the American Lung Association’s program and can be mailed directly to participants’ homes.
Is there a cost for the Lung Health Navigator program?
No. According to the American Lung Association, the educational initiative and its consultations are free for patients and caregivers, supported by a partnership with the Feldman Family Foundation.
To learn more about the program, enroll in the Patient and Caregiver Network, or connect with a Lung Health Navigator, visit the American Lung Association website at Lung.org.
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