Parent Connections Program
We offer a number of friendly and accessible support options for families navigating a congenital lung malformation diagnosis. Some people just want a one-off chat or a quick answer to a question, while others have been connected with a parent buddy for ongoing support, connection and friendship. All our volunteers are parents who have been through a lung malformation journey with their child. We have an amazing international community of volunteers in the USA, UK, Ireland, Europe and Australia and covering a wide variety of lung malformation types and experiences, from small asymptomatic lesions to large, high-risk symptomatic cases. There are a number of ways you can connect with our community. We would love to meet you!
Text or email
TEXT: +1 (760) 650-2726
EMAIL: talk@cpamparents.org
Low-key contact
Quick questions
Fast support
Connect with a parent buddy
Sign up to receive more information on how to connect with a parent buddy. We thoughtfully match families based on location and diagnosis.
Ongoing support and connection
In-depth conversation
Deeper support
Monthly drop-in group
Coming soon. Please send an email to talk@cpamparents.org with your name and diagnosis (if known) and we will let you know as soon as we are up and running.
Meet other parents at the same stage of diagnosis
Ask questions and share
Community support
Here are some things our wonderful trained parent volunteers are really good at doing:
making sense of your specific diagnosis (and all the acronyms)
preparing for appointments and questions to ask your care team
talking through common decision points (monitoring, timing, surgery, delivery planning)
navigating NICU / hospital logistics and emotional survival
talking through surgery, what to pack and what to expect
coping with the anxiety of “waiting and watching”
finding language for updating family/friends and advocating for yourself