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

JOIN US! WE ARE UNITING IN HOPE TO END BRONCHIOLITIS OBLITERANS SYNDROME.

Amy Skiba BOS Education day

Welcome, and thank you for uniting with us for BOS Education Day!

At the Lung Transplant Foundation, we have seen the devastating toll that BOS can take. Varying journeys and disease states bring people to lung transplant, but transplant recipients are all united in many of the same post-transplant realities. Their lives have been forever changed in many ways. New lungs breathe new life and bring hope while also carrying the possibility of complications. Post-transplant, roughly 55% of recipients will develop BOS, a form of chronic rejection, within five years. While there are currently no approved treatments, we are inspired by the recent advances in research and clinical trials for a future therapeutic.

We know that together, we can help increase 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, 2024, as we unite for BOS Education Day. Use the toolkit materials to share with your community!

Thank you for supporting the first annual BOS Education Day!

Amy Skiba, Lung Transplant Foundation Executive Director

What is bronchiolitis obliterans syndrome (BOS)?

BOS is a lung problem that can occur after lung transplantation and is the most common form of chronic lung transplant rejection. More than half of lung transplant recipients develop BOS within five years of transplantation. When BOS develops, a person will have a progressive loss of lung function when compared to the highest function after transplantation.

Although the initial symptoms of BOS may sometimes mimic symptoms of a lung infection, BOS is not due to infection. The main change seen with BOS is scarring of the small airways of the transplanted lung(s). This scarring leads to the narrowing of the airways, limiting airflow with loss of lung function. Early after the onset of BOS, a person may not have any symptoms, but the recipient will develop breathlessness and chronic cough as BOS gets worse. There are different stages of BOS based on lung function results. Some people develop an early stage of BOS and progress to more severe stages over a short time period, while others may remain stable in a stage for an extended period of time. There is no clear way to predict the course of BOS over time for a given person.

On June 22, 2022, the Lung Transplant Foundation hosted a Patient-Focused Drug Development meeting with the FDA. During the meeting, caregivers and people living with BOS shared their personal stories to unite the community and create hope.

Help educate about BOS (bronchiolitis obliterans syndrome)

We want to build awareness so that we increase education about BOS, and help speed the development of potential new treatments. We put together a toolkit to make it easy for you to share! Check it out and mark your calendar for Oct. 25.

Jeff Goldstein, our founder on Bronchiolitis Obliterans Syndrome

October 25 is the annual #BOSeducationDay. Take a look at this message from our late founder and President, Jeff Goldstein. We are grateful he had the vision to address lung transplant rejection and unite the community to develop new treatments.

BOS FAQs

Thank you to our BOS Education Day Sponsors

2023 BOS Education Day Sessions

Clinical Trial Awareness and Education BOS Education Day Oct 25

Clinical Trial Awareness & Education

Presented by Jennifer McGrain, MS RRT, Global Head of Patient Advocacy for Rare Diseases at Zambon. Learn about clinical trials: How to find them, how to see if you qualify, and how they benefit the lung transplant community.
View the recording
Participating in a Lung Transplant Clinical Trial: Insights into the Experience

Participating in a Lung Transplant Clinical Trial

Presented by Carolyn Durham, Chief Scientific Officer, at Renovion. This session covers the real-world experience of being in a clinical trial in lung transplant.
View the recording
Spirometry and Early monitoring of BOS

Spirometry & Early Monitoring of BOS

Presented by Joseph Vincent from PatientMPower as we explore Spirometry. Learn how this device can help detect changes in your breathing and make you aware of possible changes and declines in your FEV1.
View the Recording

Non-Invasive Testing: A Key to Monitoring Chronic Rejection in Lung Transplantation

Learn more about The AlloSure Lung test. This test is intended to assess the probability of allograft rejection in lung transplant recipients with clinical suspicion of rejection and to inform clinical decision making about the necessity of allograft biopsy in such patients in conjunction with standard of care clinical assessment.
View the Recording

Medication Mastery: Tips, Tricks, and Adherence After Transplant

This resource delves into the critical aspect of medication management in the context of lung transplantation. It covers the various medications required post-transplant, their importance, and the role they play in ensuring a successful transplant journey. From immunosuppressants to anti-rejection drugs, this session provides insights into how to master the art of managing medications effectively to maintain optimal lung health post-transplant.
View the recording
The Lung Transplant Foundation is a 501(c)3 non-profit organization.
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