How the PFF’s 5-year plan seeks to expand access to expert care

I’ve been writing recently about the four pillars of the Pulmonary Fibrosis Foundation’s (PFF) new five-year strategic plan introduced last year, called “The PFF Is ME.”

In December, I explained the first pillar, Accelerate Research. The second pillar, Expand Access to Expert Care, is a concern for all patients in the pulmonary fibrosis (PF) community. I had the opportunity to interview the champion of the plan’s second pillar, Sonye Danoff, MD, PhD, the senior medical adviser for the PFF’s Care Center Network (CCN).

Danoff is also a professor of medicine at the Johns Hopkins School of Medicine, the director of the PF and interstitial lung disease program there, and the associate director of the Johns Hopkins Myositis Center. A self-described long-time clinician and researcher, Danoff said her goal is “a world where patients don’t become scared when they hear their disease [is PF], because they know we can treat it.”

I was diagnosed with idiopathic PF (IPF) in January 2017. In July 2021, I received a lifesaving bilateral lung transplant. I receive care at Inova Fairfax Hospital in Virginia, a CCN site. I was fortunate to have a CCN site less than 10 miles from my home when I was diagnosed, and, while I now live more than 90 miles away, I continue my post-transplant care there.

Danoff said a goal of the second pillar is to ensure more patients have access to expert care.

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Improving access to care

CCN sites employ a coordinated care model that brings together many disciplines in the care of PF and interstitial lung disease patients. The model is only a dozen years old and started with just nine sites, Danoff said. Today there are 86 sites in 38 states.

Making expert care accessible to more people is a top priority of the strategic plan, but to become a CCN site, a medical center must demonstrate it has the multidisciplinary team to provide the care patients need.

Another goal of this pillar is to deliver educational opportunities and resources to healthcare providers. As with many rare diseases, a healthcare provider may not immediately recognize the symptoms of PF. In my case, my primary care physician had never encountered IPF before but referred me to a pulmonologist, who suspected it and secured an appointment at Inova’s Advanced Lung Disease and Transplant Clinic.

Danoff explained that sessions similar to the continuing medical education event held at the PFF Summit — where healthcare providers can learn about new developments in diagnosing and treating PF patients — are the foundation’s vision for bringing these resources into communities.

“We would like to make it easier for our community providers, who might not have the local resources for a multidisciplinary discussion, to know how they can access” that knowledge, Danoff said. The goal isn’t to make PF experts out of community providers, but instead to provide key pieces of information that would trigger a call to a CCN, she added.

The strategic plan envisions a 20% increase in the number of healthcare providers contacting the PFF Help Center over the next five years.

Danoff said before the PFF existed, the prevailing view was that there weren’t enough patients to generate interest among care sites and pharmaceutical companies to conduct clinical trials. Now, the identification of PF has improved, therapies have been trialed and approved, and multidisciplinary teams at CCN sites have changed the trajectory of this disease for the better.

The second pillar of the new strategic plan focuses on patients and providers, and demonstrates the work the PFF is doing to help all of us make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.