We're Glad You Found Us.
Take a Breath.
A Fenwick Syndrome diagnosis is overwhelming. We know — because every person in our community has been exactly where you are. You've found the right place.
You don't have to figure all of this out today. There is no rush, no test, no wrong direction. This page exists to give you one clear next step at a time.
Your First Steps
What to Do First
These five steps are the ones every Fenwick family recommends to families who are just starting out. You don't need to do them in order. You don't need to do them all today. Start with whichever one calls to you.
Understand the diagnosis
Read our plain-language overview of Fenwick Syndrome — what it is, how it affects kidney and liver function, what it means for your child's future. Written for parents, not doctors.
Read About Fenwick SyndromeFind a specialist
Not every pediatric nephrologist has seen Fenwick Syndrome. Our network includes 180+ specialists across the country who have. Finding the right team makes an enormous difference.
Find a Fenwick SpecialistConnect with a family mentor
There is nothing like talking to a parent who has been exactly where you are. Our mentor families volunteer their time to answer calls, answer emails, and simply listen. No appointment needed.
Request a Family MentorJoin our private family group
Our moderated online community is exclusively for Fenwick families. Ask questions at 2am. Share a hard day. Celebrate a milestone. People here will understand things no one else in your life can.
Join the CommunityLearn about current research
There is active research happening right now. Clinical trials are enrolling. Progress is being made. Understanding the science — even at a high level — can replace fear with hope.
See Our ResearchNewly Diagnosed Family Guide
A 28-page PDF guide created by Fenwick families for Fenwick families. Covers the first year after diagnosis — questions to ask your specialist, how to talk to your other children, navigating insurance, self-care for parents. Print it out. Keep it close.
What You Might Be Feeling Right Now
Fear— that's normal. Fear of the unknown is one of the hardest parts of a rare disease diagnosis. The information you're about to learn will reduce it, even if it doesn't eliminate it.
Grief — even before anything has happened. Grieving the future you had imagined for your child is a real and valid part of this process. Give yourself permission to feel it.
Isolation— rare disease parents often feel deeply alone because almost no one in their lives has heard of Fenwick Syndrome. That's real. Our community was built specifically to change that.
The urge to fix it immediately— also completely normal. The hardest thing we can tell you is that some of this takes time. But “taking time” doesn't mean nothing is happening. It means building the right team, getting the right information, and taking the right steps.
All of this is normal. All of it is survivable. And none of it has to be faced alone.
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You are not alone in this.
2,400 families have been where you are right now. We built everything on this site for you.