PF Warriors marks Pulmonary Fibrosis Awareness Month with AI forum and advocacy push

PF Warriors is spotlighting Pulmonary Fibrosis Awareness Month throughout September with patient education, support groups, advocacy and storytelling under the theme “MY PF LIFE.” The campaign includes a Sept. 19 forum in Grapevine, Texas, on AI in interstitial lung disease care and ongoing efforts to amplify patient voices in research and policy.

Why it matters: - Pulmonary fibrosis affects daily life, medical decisions and family caregivers, not just clinical appointments. - PF Warriors is using Awareness Month to push education, support and policy advocacy for people living with pulmonary fibrosis and interstitial lung disease. - The monthlong effort is designed to connect patients with reliable information, expert guidance and peer support.

What happened: - PF Warriors launched its September Pulmonary Fibrosis Awareness Month activities under the theme “MY PF LIFE.” - The organization is hosting a free in-person and virtual patient and caregiver forum on Saturday, Sept. 19, in the Dallas-Fort Worth area. - The in-person forum will be held at the Hilton DFW Lakes Executive Conference Center in Grapevine, Texas. - PF Warriors is also running weekly online support group meetings, virtual education programs, patient and caregiver story sharing, advocacy outreach and participation in national and global collaborations.

The details: - The Sept. 19 forum is titled “AI in ILD Care: What Patients and Caregivers Need to Know, Ask, and Understand.” - Registration is required for both the in-person and virtual sessions. - More information for the in-person event is available here. - Registration for the virtual session is available here. - The forum will focus on how artificial intelligence affects online health information, CT imaging, treatment decisions, communication with healthcare teams, genetics and family questions, and advocacy. - Jeff Swigris, a PF Warriors Medical Advisory Council member, said the goal is to help attendees understand what AI can and cannot tell them and leave them better prepared to talk with care teams. - PF Warriors is continuing educational programming, Spanish-language support and online engagement throughout the month. - Dolly Kervitsky, president of PF Warriors, said education and support are tied together because life with PF brings questions that extend beyond medical visits.

Between the lines: - The campaign reflects a shift toward patient-led education that treats lived experience as central to care discussions. - The focus on AI suggests growing concern about how patients and caregivers interpret machine-generated health information. - PF Warriors is also elevating patient testimony from the first PF-focused U.S. Food and Drug Administration Listening Session held in April. - During that FDA session, patients and caregivers discussed symptoms, disease progression, oxygen needs, treatment, quality of life and family challenges. - PF Warriors posted a summary of that meeting here. - In the United States, PF Warriors is working with other patient and advocacy groups on supplemental oxygen access and on legislation aimed at research and therapy barriers. - The SOAR Act addresses access to supplemental oxygen and related services. - The FAIR Act proposes a pathway intended to accelerate access to clinical trials and therapies for people with rare diseases. - Teresa Barnes, PF Warriors’ chief executive warrior, said advocacy starts with listening to patients and caregivers and bringing those experiences to policymakers. - PF Warriors also participates in a global pulmonary fibrosis coalition with patient organizations, respiratory societies and industry partners. - During the European Respiratory Society International Congress in Barcelona, PF Warriors took part in patient and caregiver meetings focused on clinical research and diagnostic challenges. - Those meetings included participants from the U.S., U.K., Greece, Japan and other European countries. - PF Warriors also contributed to two research posters at the congress with Avalyn Pharma and Boehringer Ingelheim. - The Avalyn Pharma poster examined patient perspectives on idiopathic pulmonary fibrosis clinical trial participation, including preferences, motivations and comfort with study design. - The Boehringer Ingelheim poster focused on the design of the FIBRONEER-ACT trial for patients with fibrosing ILDs at risk of progressive pulmonary fibrosis.

What’s next: - PF Warriors will continue its weekly support groups and educational programming through September. - The organization will keep sharing patient and caregiver stories as part of the “MY PF LIFE” theme. - Advocacy work around oxygen access and rare-disease therapies is expected to continue alongside the Awareness Month campaign. - PF Warriors says membership is free and the network serves more than 25,000 members across the U.S. and 14 other countries.

The bottom line: - PF Warriors is using Pulmonary Fibrosis Awareness Month to pair education with advocacy, while making patient and caregiver experience the center of the conversation.