Rare Kidney Disease Foundation

I have recently started volunteering with the Rare Kidney Disease Foundation. It is an advocacy group for patients of ADTKD, either UMOD or MUC1. Everyone is a volunteer. We are excited by possible treatments for this genetic disease. One of our goals is to try to find as many patients who don't know they have these diseases and refer them for free testing. It is suspected it is far more common than is realized.

These are the questions that can help direct you for testing:
Do several of your family members have kidney failure?
Has your doctor said you have an inherited kidney disease, but he or she isn’t sure of the exact name?
Has a disease run in your family for a long time, but no one knows what it is?
If you are asking yourself any of these questions, you may qualify for a free genetic test to determine if you have ADTKD.

Rare Kidney Disease Foundation, https://www.rarekidney.org/genetic-testing