Navigating congenital lung malformations together
We’re the only global nonprofit dedicated to supporting anyone affected by CPAM (previously CCAM), BPS, bronchial atresia, CLE/overinflation and other congenital lung malformations.
A congenital lung malformation — or CLM — is a rare condition where part of a baby’s lungs did not develop normally during pregnancy. CPAM/CCAM is the most common type of CLM.
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My baby has just been diagnosed with CPAM or another CLM
Learning there is something wrong with your baby’s lungs can be stressful, isolating, and overwhelming.
We're here to help you feel less alone, better informed, and more confident as an important member of your child’s care team.
We provide a variety of connection and support options for anyone affected by a CLM, from texting with a volunteer to ongoing peer support and reading real life community stories.
How we help
We create clear, accurate and up-to-date materials, guides and tools on congenital lung malformations, always carefully reviewed by medical experts.
We support research and work alongside expert clinicians to learn from each other and break down barriers between medical teams and families to advance our understanding of these rare abnormalities.
Our work
70% of CLMs are diagnosed prenatally. That often means stressful pregnancies, disrupted birth plans, and confusing decisions about possible surgery and long-term management.
There are currently no internationally agreed-upon guidelines or standards of care for managing CLMs.
Families are too often faced with out-of-date or inaccurate information and conflicting advice that varies from country to country and even hospital to hospital.
We support families and individuals at any stage of a CLM journey, helping you feel less alone, better informed, and more confident as important members of your child’s care team.
There are several main types of congenital lung malformation
CPAM (or the old name CCAM) is a mass of non-functioning lung tissue and the most common CLM. Most CPAMs are small and won’t cause problems during pregnancy or after birth. In rare cases the mass can grow very large, pushing on other structures in the chest and causing serious complications.
A bronchopulmonary sequestration (BPS) is similar to CPAM but the mass gets its blood supply from outside the pulmonary system. Hybrid masses, those with features of both CPAM and BPS, are also common.
Bronchial atresia (CBA) is a blockage in part of the lungs, so after birth air can’t move in and out normally. Serious complications are rarer with CBA.
Congenital lobar emphysema (CLE) is a condition where part of the lungs becomes overinflated, pushing on other lung tissue.