Helping people with rare diseases that cause kidney disease

Receiving a kidney disease diagnosis can often come as a shock. Because kidney disease usually does not have any symptoms until the late stages, most people are unaware they even have it. The top two causes of kidney disease are diabetes and high blood pressure, but many other things—including quite a few rare diseases—can also cause kidney disease and kidney failure.

The American Kidney Fund (AKF) is here to help and we want you to know that no matter how rare your kidney disease may be, you are not alone. On our rare disease portal, you can learn about 17 of the more common rare diseases that can cause kidney disease, including cystinosis, nephrotic syndrome and focal segmental glomerulosclerosis (FSGS).

Cystinosis, for example, is a multisystem genetic disease that causes 5% of all childhood cases of kidney failure. Our new educational toolkits empower teenagers and their families with important information about cystinosis and preparing for transplant. These toolkits were developed with support from Horizon Therapeutics plc and in coordination with the Cystinosis Research Network.

Nephrotic syndrome is a group of symptoms that, together, indicate that your kidneys are not working as well as they should. FSGS causes scars on some of the kidneys’ filters, making it harder for your kidneys to do their main job of filtering out waste from your body. FSGS is the leading kidney disease that causes nephrotic syndrome. We hosted a webinar on nephrotic syndrome and FSGS that explains what both rare diseases are, discusses available treatments for FSGS and more. The webinar can be watched for free on-demand on our website. We are grateful for educational grants from Mallinckrodt Pharmaceuticals which support these efforts.

AKF works closely with various corporate partners whose support enables us to create awareness around rare diseases that can affect the kidneys. Additional support from Alexion Pharmaceuticals, Otsuka America Pharmaceuticals Inc. and Sanofi Genzyme have allowed us to expand the information and resources that we can make available to patients and families affected by rare diseases on our website.

Other rare diseases you can learn about through our rare disease portal are:

  • Alagille syndrome
  • Alport syndrome
  • Amyloidosis
  • Fabry disease
  • Glomerulonephritis
  • Goodpasture syndrome
  • aHUS (atypical hemolytic uremic syndrome)
  • Hemolytic uremic syndrome (HUS)
  • Henoch-Schonlein purpura
  • IgA nephropathy (Berger’s disease)
  • Interstitial nephritis
  • Minimal change disease
  • Thrombotic thrombocytopenic purpura (TTP)
  • Granulomatosis with polyangiitis (GPA)

Our Advocacy Network of more than 14,000 Ambassadors fights for legislation and public policy that would improve access to care for kidney patients and increase research funding for kidney disease. You can watch our webinar about advocating for a rare disease watch at your convenience on our website.
You can become an AKF Ambassador to advocate for people with rare kidney diseases, and all people living with kidney disease and kidney failure, by signing up here.

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About the Author(s)

Ben Shlesinger

Ben Shlesinger is the associate director of government relations at the American Kidney Fund.

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