You Are Not Alone.
The ARPKD/CHF Alliance supports patients, families, and healthcare providers facing Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis — building a community dedicated to better outcomes and quality of life.
The world's only organization 100% dedicated to ARPKD & CHF — from hopelessness to hope.
Founded by families in 2001 · 25 years, one community · A 501(c)(3) nonprofit organization
Newly Diagnosed?
A diagnosis can be overwhelming. We've created a guide specifically for families who have just learned about ARPKD/CHF.
Start HereConnect with Families
You are not alone. Connect with families across the world who understand what you're going through.
Find CommunitySupport Our Mission
Help us fund research and support families affected by ARPKD/CHF — every gift makes a difference.
Ways to HelpWhat is ARPKD/CHF?
Autosomal Recessive Polycystic Kidney Disease & Congenital Hepatic Fibrosis — two rare genetic conditions that often occur together.
What is ARPKD?
Autosomal Recessive Polycystic Kidney Disease
ARPKD stands for Autosomal Recessive Polycystic Kidney Disease — a rare, inherited condition that affects the kidneys, often from before birth.
What is CHF?
Congenital Hepatic Fibrosis
CHF stands for Congenital Hepatic Fibrosis, also known as non-cirrhotic portal hypertension — a condition affecting the liver that frequently accompanies ARPKD.
Support at Every Step of the Journey
Patient & Family Support
Connect with other patients and families facing similar challenges through our peer support network — for emotional support, practical advice, and shared experiences.
Learn moreAdvocacy & Awareness
We work to increase public awareness and advocate for policy changes that benefit patients and families. Our campaigns promote early detection, access to care, and funding for research.
Learn moreResearch Initiatives
We support research to advance understanding of these conditions, collaborating with leading medical institutions to accelerate the development of better treatments and therapies.
Learn moreResources
Comprehensive information and support for managing life with ARPKD/CHF, available to all members. We provide updates on current research and clinical trials relevant to these conditions.
Learn more“To educate, advocate, support and advance research specific to ARPKD/CHF, with the purpose of improving the lives of those affected.”
From hopelessness to hope — transforming the future for ARPKD and CHF patients.
Stories of Hope
Hear from members of our community who have benefited from the ARPKD/CHF Alliance. Their stories inspire us to continue our mission of support and advancement.
The ARPKD/CHF Alliance provided our family with emotional support during our diagnosis. The guidance and community connection helped us feel less alone in this experience. We're grateful for their dedication to improving outcomes for all affected families.
The ARPKD/CHF Alliance has been instrumental in my family's journey and have provided excellent educational conferences. They gave us hope when there was none.
I found support and practical guidance through the Alliance. Knowing there are other adults living with this has been invaluable.
Real journeys. Real hope.
Every family's story matters. These are a few of ours.
Hannah's Story
My name is Hannah and I'm a 39-year-old woman who was diagnosed a year ago with Congenital Hepatic Fibrosis. I live in Las Vegas and there are no local hepatologists; the only ones…
Read their story
To All the Mothers Who Make Broken Things Beautiful
By Linda Bevec I came across the most interesting bowl in an art shop recently. It sat proudly on a shelf and caught my eye. I picked it up and realized it was broken in several pi…
Read their story
Grieving a Chronic Illness
by Jennifer Hill My understanding of grief changed the day my son received his diagnosis. Grieving had always been a way to let go; a process that allowed me to cope with, and even…
Read their storyFaces of ARPKD/CHF
A glimpse of the families and faces that make up our community.
Families across the globe
From newly diagnosed families to lifelong advocates, the ARPKD/CHF community reaches across the United States and around the world — no one faces this disease alone.
Illustrative community map — regions are shown at country level to protect family privacy. Actual membership figures will be added.
The science behind the hope.
Landmark NIH Study Results
Findings from the landmark NIH Natural History Study — the largest long-term look at ARPKD/CHF, and what it means for families.
Learn moreOrgan & Tissue Donation for Research
How families can support critical research through organ and tissue donation, including the NDRI program.
Learn moreResearch, Advocacy & Community News
Read the latest research findings, advocacy efforts, and news from across the Alliance.
Learn moreTake part in research
Patients and families can play a direct role in advancing ARPKD/CHF research. See the clinical studies actively recruiting participants now.
Ways to participateBecome part of the community
There are three simple ways to be part of our mission — join as a member, give, or partner with us.
Become a Member
Join our community to receive our newsletter, updates, and support. Membership is free and open to everyone, with optional supporting levels for those who wish to give more.
Become a MemberDonate
Prefer to give directly? Your tax-deductible gift funds research, patient support, and advocacy for the ARPKD/CHF community.
Give NowPartner With Us
Sponsors, companies, and research funders — let's talk about partnering to advance care and research for ARPKD/CHF.
Get in TouchEvery action matters.
Whether it's a gift, your time, or your voice — there are many ways to make a difference.