CPAM Parents Is Now the Congenital Lung Malformation Society

When we started CPAM Parents in October 2025, it was a small project; an idea four moms in California had about what families like ours actually needed when they got a lung malformation diagnosis. We had no idea whether anyone would find us.

Seven months later, over 1,000 people a month visit our site, from more than 60 countries around the world. We've welcomed four babies with CLM diagnoses from four different countries, we've supported families through pregnancy, through NICU stays, through surgery.

As we've grown, it's become clear that our name needed to catch up.

Why the change?

CPAM is still the most common congenital lung malformation and the diagnosis most families hear first. But we have always supported families dealing with bronchopulmonary sequestrations, congenital lobar emphysema, bronchogenic cysts, hybrid lesions, and other rare lung malformations too. In fact, our own babies were not all CPAM diagnoses but also BPS and CBA. We wanted our name to make that obvious. If you are someone who is affected by a CLM, we are here for you.

The Congenital Lung Malformation Society — the CLM Society — says that clearly.

Who we're here for

Most of our resources are built around the experience of getting a diagnosis during pregnancy, because that's how about 70% of CLM diagnoses happen nowadays. But 30% find out later—in infancy, childhood, or even adulthood—and we want those individuals and families to know they belong here too.

We're also building relationships with clinicians around the world who are working at the forefront of CLM research and care. We think families deserve access to the best and most current information available. As we grow, we're expanding our role as advocates for patients and families, not just in the support space, but at academic conferences and in research.

What's next

We're excited to share that we are officially incorporating as a nonprofit in the state of California, and we'll have more to share about the next steps in that process soon.

CLM Society reflects what we've become seven months in: a global network of parents, families, and clinicians who care deeply about improving the care and management of congenital lung malformations.