I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
March 28, 2024, 04:55:28 AM

Login with username, password and session length
Search:     Advanced search
532606 Posts in 33561 Topics by 12678 Members
Latest Member: astrobridge
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Advocacy
| | |-+  Rare Kidney Disease Foundation
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: Rare Kidney Disease Foundation  (Read 637 times)
SooMK
Sr. Member
****
Offline Offline

Gender: Female
Posts: 610


« on: January 30, 2023, 01:18:32 PM »

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

Logged

SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.17 | SMF © 2019, Simple Machines | Terms and Policies Valid XHTML 1.0! Valid CSS!