Rare Kidney Disease Action Network
We are looking for patients with IgA nephropathy (IgAN) and other rare and genetic kidney diseases to join the American Kidney Fund's Rare Kidney Disease Action Network. Make a difference by sharing your story to educate lawmakers and the public about IgAN and issues that matter to you.
Be heard: Join our Rare Kidney Disease Action Network
You have the opportunity to make a positive impact by sharing your experience living with IgA nephropathy (IgAN) or other rare and genetic kidney diseases.
When you become a part of our welcoming Rare Kidney Disease Action Network you will have the chance to connect with other people who are also navigating the challenges of living with rare and genetic kidney diseases. Together, we'll explore the issues that affect kidney care, and you'll participate in engaging sessions on how to effectively communicate with the public and the people who make decisions about your health. From diagnosis to treatment, sharing your story can help others to benefit from your journey.
You may be eligible if you have any of the following kidney diseases:
- IgA Nephropathy
- Polycystic Kidney Disease
- APOL1-Mediated Kidney Disease (AMKD)
- Lupus nephritis
- Alport Syndrome
- aHUS (atypical hemolytic uremic syndrome)
- Focal segmental glomerulosclerosis (FSGS)
- Primary hyperoxaluria (PH1 or PH2)
- Cystinosis
- Fabry Disease
- Dent Disease
- C3G
