Use your voice! Help the FDA understand what it’s like to live with Bronchiolitis Obliterans Syndrome (BOS) Wednesday, June 22, 2022 • 10:00 a.m. - 3:00 p.m. ET • #BOSELPFDD

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

We’d LOVE for you to register to attend the meeting.

But if you can’t, you can still help!


Spread the word with friends, family members, and loved ones and see if you can get anyone else with BOS in their life to register for the meeting. We’ve made it easy with a social media toolkit


If you can’t make the meeting, BE SURE to sign up to receive the FINAL REPORT of the meeting which will be available in October 2022.

Leave a comment!

 The opportunity to leave a public comment (by voicemail, video, or a written post) will be available up to 60 days after the meeting. Please join in! We want to include as many voices as possible.


Lastly, if you can see your way clear, donate $5, $10 or anything you can spare to help us make sure we can amplify our BOS message and get more help for those who need it.

Share Your BOS Story

Share your Story

Everyone’s BOS story is completely different. Some people can live with BOS for 10+ years, and some people’s lives are completely disrupted. For this reason, we are hoping to get 75 BOS patients and caregivers to share their story during the meeting.

Share your BOS Story

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 bad guy raining on the parade of lung transplants 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. Fully 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. You can help us change all that by registering for our virtual meeting and sharing your perspective.

Learn more about 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 is 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.

How To Watch

The June 22 Meeting will be a Vimeo Livestream. It will include patient testimonies and remote audience participation. The meeting agenda will focus on two patient panels and audience discussion sessions on living with BOS, treatments for the disease, and potential clinical trials for BOS.

Registration Link Coming Soon


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 Patient Focused Drug Development Meeting?

Watch this web meeting discussing what a Patient Focused Drug Development Meeting is.