Pulmonary Fibrosis Foundation

1. Accelerate new and improved treatments and, ultimately, a cure.
Currently, two FDA-approved therapies have been shown to slow the progression of pulmonary fibrosis, but there remains no cure for this deadly disease. Rapid development of more effective treatments to prevent, halt, or reverse lung fibrosis and inflammation is imperative.

2. Improve the care of all patients with PF.
The care received by PF patients may vary by medical center, provider, and region due to the inherent complexity of making a diagnosis and the limited access to care. People living in underserved and rural communities may be
especially vulnerable to disparities in care. The PFF will expand its efforts to ensure more consistent care across the U.S.

3. Provide reliable, high-quality patient support and education.
The PFF hosts a suite of programs that provide support and education to patients, their caregivers and families, and healthcare professionals. The PFF Help Center offers up-to-date medical information, including the availability of support services. The PFF’s Disease Education Webinar Series and written education materials
cover vital medical topics. PFF-sponsored support groups let participants share experiences, practical information, and resources. The PFF Ambassador program empowers patients, caregivers, and healthcare professionals to become spokespeople for the PF community. These programs are all available to the community
free of charge.

Partner with researchers and industry to leverage and enhance the use of the PFF Registry and PFF Care Center Network (CCN) to study key PF research questions.

Lead an effort to work with the FDA to improve and speed up the process for approving new PF treatments.

Increase participation of patients with PF in clinical trials.

Enhance public policy advocacy efforts to increase funding of PF-related research at the National Institutes of Health and U.S. Department of Defense.

Support the next generation of PF researchers by expanding the PFF Scholars program.

Facilitate greater research collaboration among the CCN centers.

Establish best practices across the CCN to identify PF standards of care.

Improve access to supplemental oxygen and pulmonary rehabilitation.

Redirect general awareness efforts to create greater awareness of the PFF and its resources.

Create a more focused, tailored support and education path for newly diagnosed patients.

The Pulmonary Fibrosis Foundation is focused on our mission to act as the trusted resource for all who are affected by this disease. Our community programs include:

PFF Care Center Network
PFF Registry
PFF Patient Communication Center
PFF Ambassador Program
An international network of support groups
The PFF Summit
Comprehensive disease education materials

We hosted our 6th PFF Summit in 2021. More than 1,000 patients, caretakers, physicians, researchers, and industry partners gathered virtually for our largest Summit to date.

Our Care Center Network has grown to 68 sites nationwide, and we will continue to expand.

Our Support Group Network now numbers over 150 across the globe and continues to grow.

We plan to introduce the next phase of the Registry in 2022, the PFF Community Registry. The Community Registry will greatly increase the number of subjects in the study, will be more efficient in data collection, and will increase utilization from researchers. The Community Registry will be an unmatched resource for future research that will help lead us down a path for a cure.