Building community
Supporting families
Advancing research
We are a small parent-led organization dedicated to providing education, support, and community to patient-families navigating congenital lung malformations — while collaborating with clinicians to raise awareness and advance research in the field.
20%
Approximate number of CLM cases that are high-risk for prenatal or postnatal complications
70%
of lung malformations are currently diagnosed prenatally
90%
of babies with a lower-risk lung malformation will be able to breathe without support at birth
1 in 2,500
the estimated number of babies born with a lung malformation
Source: Shaun M. Kunisaki: Narrative review of congenital lung lesions, Translational Pediatrics 2021;10(5):1418-1431
How we help
-
We provide clear, accurate and up-to-date materials, guides and tools on congenital lung malformations, always written by parents and carefully reviewed and edited by a medical expert. We also curate and share resources to navigate a lung malformation journey.
-
We provide connection and support options for families. You can text or email with a trained parent volunteer who has been through this diagnosis before—no question is too small. We also run a friendly monthly support group for families at any stage of a lung malformation journey.
-
We support research to improve counseling, management, and treatment of lung malformations. We 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. And we share real life stories from families who have navigated these diagnoses before and come out the other side.
Latest articles
Latest Family Stories
New diagnosis?
Check out our parent guides—written by parents for parents and always reviewed by medical experts.
A congenital lung malformation (CLM) is a rare condition where part of a baby’s lungs did not develop normally during pregnancy.
In the majority of cases the prognosis for babies born with a lung malformation is excellent. In rarer cases the CLM will cause serious complications prenatally and/or after birth. The cause of CLMs is currently unknown.
Going through a high-risk pregnancy is a stressful experience that increases the risk of developing prenatal or postpartum depression or emotional distress. We support families from diagnosis through to surgery and beyond to improve the health, wellbeing, and care of babies with lung malformations and their parents.
Parent Connections Program
Have a question about diagnosis, surgery, or anything in between? Want to talk to someone who has been there before?
We provide clear and compassionate peer support for families navigating a congenital lung malformation — from diagnosis to surgery and beyond.
or
Text: +1 (760) 650-2726
or
email: talk@cpamparents.org
A parent will respond as soon as possible, normally within 24 hours
We provide peer support and practical guidance, we are not clinicians and we do not provide medical advice
Volunteer with us
Have you been through a lung malformation journey? We would love to hear from you. We are always looking for compassionate volunteers to support newly diagnosed families: all experiences and all countries welcomed.