The Voice of the Patient Report

This report is the culmination of the Lung Transplant Foundation’s efforts to engage patients in all aspects of treatment development for Bronchiolitis Obliterans Syndrome or BOS.

The Voice of the Patient reports 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 current available treatments, and lack of overall available treatments for BOS including the burden of receiving treatment.

The Lung Transplant Foundation wants the FDA, drug manufacturers, researchers, and clinical trial design experts to take our patient’s voice, their words, and their experiences and recommends that these findings be considered when developing potential BOS therapeutics and eventually a cure for BOS.

The Externally Led PFDD meeting and hearing our patients’ voices on living with Bronchiolitis Obliterans Syndrome is an enormous step in the right direction in bringing new treatments that keep the patent at the forefront, of our community.

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

Recorded June 22, 2022

The June 22 EL-PFDD meeting is a historic, pivotal event for The Lung Transplant Foundation and more importantly, for lung transplant survivors. It will help us educate the FDA about the challenges of living with BOS so more effective treatments can be developed.

Did you miss the live meeting?

You can still participate and help!


Make a donation to help us amplify our BOS message and get more help for those who need it. A donation of $10, $25 or more will go a long way. Help us put an end to BOS!

Share Your BOS Story

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 10:00 a.m. – 3:00 p.m. ET our goal was to hear from patients and caregivers about what it’s like to live with BOS, so 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 BOS

The first human lung transplantation was performed on June 11, 1963. It was considered then (and now) to be something of a miracle procedure. A lung transplant can bring back easier breathing, provide years of life, and replace healthy lung function for people with severe lung disease. The unfortunate complication is a disease called Bronchiolitis obliterans syndrome or BOS (pronounced BOSS). The disease can attack the healthy new lung and make the body reject it. A full 50% 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. 

Learn more about BOS


Meeting Facilitators

Lung Transplant FoundationExecutive Director

Amy Skiba

Lung Transplant Foundation
Executive Director
Lung Transplant FoundationBoard Member

Jonathan Reiss

Lung Transplant Foundation
Board Member
Lung Transplant FoundationBoard Member

Tim Berger

Lung Transplant Foundation
Board Member

Thank You To Our Sponsors

Transplant Talk: A Monthly Lung Transplant Webinar

What is a Patient Focused Drug Development Meeting?

Watch this webinar to learn more about PFDD Meetings.