Health organizations collaborate to address idiopathic pulmonary fibrosis on Rare Disease Day 2025

The American College of Chest Physicians (CHEST), the PF Warriors, the Rare Disease Diversity Coalition (RDDC)-a program at the Black Woman's Health Imperative-and the National Association of Community Health Workers (NACHW) announce their collaboration to address idiopathic pulmonary fibrosis (IPF) as a chronic disease on Rare Disease Day 2025.

Together, the organizations will employ designated activities that will build a knowledge base on the current IPF landscape and use the findings from the landscape scan to identify gaps. They will then develop survey tools to gain insights from diverse target audiences, which will inform the creation of educational and awareness assets. The organizations will disseminate these assets through strategic partnerships with tailored messaging to ultimately improve patient outcomes.

The organizations support that IPF meets the definition of chronic disease and is currently associated with poor outcomes given difficulties diagnosing the disease at an early stage. Despite growing recognition of IPF as a progressive and life-threatening lung disease, these delays in diagnosis remain a critical challenge. This collaboration aims to close gaps in early recognition and management by equipping health care providers, public health professionals, and patients with the necessary resources.

"It's wonderful to see this group of organizations coming together in support of getting IPF more on the radar," says John Howington, 2025 President of CHEST. "In our initiative Bridging Specialties^®: Timely Diagnosis for ILD, we saw clearly that there is a gap in diagnosing interstitial lung diseases [(ILDs)] like IPF, and the more awareness we can all raise together, the more likely we are to begin filling that gap."

"Collaboration is essential to driving meaningful change for those living with [IPF]. PF Warriors is excited to join forces with CHEST and its partners to enhance IPF awareness, improve diagnosis and care, and address unmet needs in the respiratory community. Together, we are ensuring every patient has access to the resources and support they need," says Dolly Kervitsky, President of PF Warriors.

The Rare Disease Diversity Coalition is honored to serve on the steering committee for this critical initiative led by CHEST. Our involvement in this project aligns with our mission to reduce delayed diagnoses and improve access to quality care for underrepresented communities impacted by all rare diseases, including IPF. By advancing awareness, education, and equitable solutions, we can help ensure that all patients receive timely diagnoses and the support they need to navigate this challenging disease." 

Jenifer Waldrop, Executive Director of the RDDC

"Community health workers (CHWs) are frontline professionals who leverage their trust and shared life experiences with patients to help bridge the gap between primary and specialty care and advance system improvements. CHWs' core roles in community health integration, principal illness navigation, and the social determinants of health can mitigate diagnostic delays and optimize outcomes for rare chronic diseases like IPF, which improve health outcomes, especially for underserved communities," says Denise Octavia Smith, CHW, MBA, PN, Executive Director of the NACHW.

CHEST is the lead organization, ensuring alignment across partners, managing the program execution, and overseeing the educational content development. The next step of the project will be to facilitate a report of the IPF landscape.