A first step — taken together.
A diagnosis of ARPKD/CHF can feel overwhelming and isolating. Please know — you have found a community of families who understand exactly where you are right now. You are not alone.
First Steps
There is no rush. Take these one at a time, as you have energy.
- 1
Learn about ARPKD/CHF
Read a plain-language overview of the condition, how it's inherited, and how it's treated.
- 2
Find a specialist
Connecting with experienced pediatric nephrologists and hepatologists is one of the most important early steps.
- 3
Connect with other families
Join our Facebook community of parents who understand exactly where you are right now.
- 4
Become a member
Membership is free and includes our newsletter, research updates, and community support.
- 5
Learn about current research
Hope is real, and research is advancing. See what's happening now — and how you and your family can take an active part.
What You Might Be Feeling
Fear. Grief for the future you imagined. Anger. Confusion. A flood of medical terms and decisions that no one prepared you to make.
These feelings are normal. They do not mean you are doing this wrong. They mean you love your child.
We have stood where you are standing. We will walk beside you for as long as you need.
Reach Out
If you'd like to talk to someone, we're here. There's no question too small.