Health organizations join forces on Rare Disease Day for idiopathic pulmonary fibrosis

(Press-News.org) Glenview, Illinois – 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," says 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.

About the American College of Chest Physicians
The American College of Chest Physicians® (CHEST) is the global leader in the prevention, diagnosis, and treatment of chest diseases. Its mission is to champion the prevention, diagnosis, and treatment of chest diseases through education, communication, and research. It serves as an essential connection to clinical knowledge and resources for its 22,000+ members from around the world who provide patient care in pulmonary, critical care, and sleep medicine. For information about the American College of Chest Physicians, visit chestnet.org.

About PF Warriors
PF Warriors is a global support network that offers hope, inspiration, and education to individuals and their families affected by pulmonary fibrosis (PF). Our mission is to help those confronting this life-altering progressive lung disease lead their best possible lives after a diagnosis. PF Warriors operates as a project of Players Philanthropy Fund, Inc, a tax-exempt public charity under Section 501(c)(3). Learn more about PF Warriors at pfwarriors.com.

About The Rare Disease Diversity Coalition
The Rare Disease Diversity Coalition™ (RDDC™) is an initiative launched by the Black Women's Health Imperative to address the extraordinary challenges faced by historically underrepresented populations with rare diseases. RDDC brings together rare disease experts, health and diversity advocates, and industry leaders to identify and advocate to alleviate the disproportionate burden of rare diseases on historically marginalized populations. We envision a world with healthy outcomes in all rare disease patient communities. Learn more at rarediseasediversity.org.

About the Black Women's Health Imperative
The Black Women’s Health Imperative (BWHI) is a national nonprofit organization dedicated to advancing health equity and social justice for Black women across the lifespan through policy, advocacy, education, research, and leadership development. The organization identifies the most pressing health issues that affect the nation's 22 million Black women and girls and invests in the best strategies and organizations to accomplish its goals. You can find more information about BWHI at bwhi.org.

About The National Association of Community Health Workers
The National Association of Community Health Workers (NACHW) is the only national membership organization founded in April 2019 to unify the CHW profession and support communities to achieve health, equity, and social justice. NACHW advances CHW capacity, vision, and voice in partnerships with over 2,300 active members, diverse in language, ethnicity, and experiences, living in all 50 states, over 30 Indigenous US tribes, Washington, DC, Puerto Rico, and a growing number of freely associated states and US territories. Learn more at nachw.org.

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