Our mission is to improve the lives of lung transplant patients and their families.

Bronchiolitis Obliterans Syndrome (BOS) Externally-led Patient-Focused Drug Development Meeting

The June 22, 2022, Bronchiolitis Obliterans Syndrome Externally-led Patient-Focused Drug Development (EL-PFDD) meeting was a historic, pivotal event for the Lung Transplant Foundation and more importantly, for lung transplant recipients. It will help us educate the FDA about the challenges of living with BOS so that more effective treatments can be developed.

Watch the recorded meeting below:

What are EL-PFDD meetings?

Externally led patient-focused drug development (EL-PFDD) meetings bring together patients and care partners, US Food and Drug Administration (FDA) representatives, pharmaceutical companies, and doctors who are experts in the particular disease. For the meeting on Wednesday, June 22, 2022, our goal was to hear from patients and caregivers about what it’s like to live with BOS, so that the FDA and pharmaceutical companies can understand the patient experience. This information can help the FDA make more informed decisions as they approve potential medicines and treatments for BOS. It will also allow pharmaceutical companies to design meaningful clinical trials for BOS patients.

About bronchiolitis obliterans syndrome (BOS)

The first human lung transplant was performed on June 11, 1963. It was a revolutionary procedure. A lung transplant can bring back easier breathing and provide years of life for people with severe lung disease.

An unfortunate complication of lung transplant is a disease called bronchiolitis obliterans syndrome or BOS (pronounced "boss"). The disease can attack the healthy new lung(s) and make the body reject the lung(s). Fifty percent of lung transplant recipients may develop BOS. If the condition develops, it can make an already difficult transplant journey that much harder. The poor outcomes regarding BOS are due to poor diagnostic criteria, poorly understood disease pathogenesis, and very few studies of therapeutic or supportive care interventions.

We know that together, we can help improve education about BOS, and, in turn, help speed the development of potential new treatments and facilitate understanding of the cause of the condition. Join us on October 25, 2023, as we unite for BOS Education Day.

The Voice of the Patient Report

The Voice of the Patient Report shares patients' lived experiences with BOS in their own words. Patients share what it’s like to live with BOS, frustrations over insurance not covering the currently available treatments, the lack of available treatments for BOS, and the burden of receiving treatment.


This information is a public service of the Lung Transplant Foundation. The content is for educational purposes only. It should not be used as a substitute for the medical advice of one’s health care provider.

The Lung Transplant Foundation is a 501(c)3 non-profit organization.
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