What support does the CLM Society provide?

Our peer support program matches trained parent volunteers with individuals or families who are affected by a congenital lung malformation. We offer emotional and practical support at any stage of a CLM journey from diagnosis through to surgery and beyond.

Who are the volunteers?

Our volunteers are currently all parents who have gone through a CLM journey with their child or baby. We come from a range of backgrounds and countries and we represent a variety of CLM experiences and diagnoses—CPAM, BPS, Hybrid lesions, and CBA. Some of our children went through surgery, some didn’t, some were symptomatic at birth, others were asymptomatic, some had prenatal interventions, others didn’t.

I don’t live in the US. Can I get support?

Yes! We have volunteers in many countries around the world. CLM diagnoses raise many of the same questions and concerns regardless of where you live, and our mentors can offer emotional support, share their own experiences, and help you feel less alone.

That said, healthcare systems, surgical approaches, and follow-up protocols vary significantly between countries, so there may be times when we're not the best source for guidance on your specific situation. We'll always be upfront about that.

What are some things I can reach out about?

You can contact us with any question or concern about anything related to a congenital lung malformation. No question is too small or too big. Some people just have one quick thing they want answered or clarified, some want a more in depth consult or conversation, while others have struck up longer term connections with a volunteer who has checked in and offered support through pregnancy, birth, surgery and recovery.

Do you offer medical advice?

No. We are parent volunteers who have a lot of experience navigating CLMs but we are not doctors or clinicians. We can help you make sense of your diagnosis, we can offer practical and emotional support, walk you through what to expect, and help you engage with your baby’s care team, but we do not offer medical advice.