Reaching underserved patients in the kidney community: American Kidney Fund expands online resources for rare diseases

FOR IMMEDIATE RELEASE

Focuses awareness and education about rare disease links to kidney disease

ROCKVILLE, Md. (September 6, 2018) – Because many relatively unknown rare diseases can cause permanent damage to the kidneys, the American Kidney Fund (AKF) today announced it has significantly expanded the information available on its website for 17 rare diseases that can lead to chronic kidney disease (CKD) and end-stage renal disease (ESRD, or kidney failure).

Rare diseases—those that affect fewer than 200,000 Americans—are often poorly understood, and patients and their families can have difficulty finding information and resources to help. The expanded rare disease section of AKF’s website includes information links to resources and support groups for:

  • Atypical hemolytic uremic syndrome (aHUS), which causes blood clots that can block blood flow to the kidneys, leading to CKD and ESRD over time.
  • Alagille syndrome, which damages the liver and leaves certain wastes in the blood, leading to kidney damage.
  • Alport syndrome, a genetic condition affecting the shape of certain parts of the body, including the kidneys.
  • Amyloidosis, which causes proteins to build up in clumps inside the kidneys and other organs and tissues, causing damage.
  • Cystinosis, a buildup of a protein component called cystine in the body’s cells, leading to permanent kidney damage and ESRD.
  • Fabry disease, which causes the kidneys and other organs and systems in the body to not work correctly, damaging the kidneys and ESRD over time.
  • Focal segmental glomerulosclerosis (FSGS), a scarring of the kidneys that diminishes their ability to filter wastes from the body, leading to ESRD.
  • Glomerulonephritis, an inflammation of the tiny filters (glomeruli) in the kidneys that can cause damage over time.
  • Goodpasture syndrome, a group of conditions affecting the kidneys and lungs in which the immune system attacks the glomeruli and causes glomerulonephritis.
  • Hemolytic uremic syndrome (HUS), the leading cause of acute kidney injury, often caused by E. coli, which destroys red blood cells that then block the kidneys’ filters.
  • Henoch-Schönlein purpura, an inflammation in the body’s small blood vessels, including those in the kidneys, that causes them to become swollen and leak.
  • IgA nephropathy (Berger’s disease), which occurs when immunoglobin A (IgA) antibody deposits clump inside the kidneys, causing damage that can lead to CKD and ESRD.
  • Interstitial nephritis, which happens when the space between the small tubes in the kidneys become inflamed, reducing the kidneys’ ability to filter properly.
  • Minimal change disease, a disorder in which a large amount of protein is lost in the urine and that can lead to nephrotic syndrome.  
  • Nephrotic syndrome, a group of symptoms that, together, indicate that the kidneys are not working as well as they should.
  • Thrombotic thrombocytopenic purpura (TTP), a rare blood disorder that causes microscopic clots that make it hard for oxygen to reach the kidneys and other organs, leading to kidney damage and ESRD.
  • Granulomatosis with polyangiitis (formerly called Wegener’s granulomatosis), a rare form of vasculitis which causes swelling and irritation of blood vessels that can damage the kidneys and other organs.

“Coping with a rare kidney disease presents significant challenges to patients and families, and information on rare kidney diseases can be difficult to find,” said LaVarne A. Burton, president and chief executive officer of the American Kidney Fund. “We wanted to give patients and their families a place where they can find information that will be helpful in understanding how their disease affects their kidneys, and in some cases, other organs and tissues.”

In addition to providing educational content, AKF works with patients with rare diseases to help them advocate for greater awareness and increased research funding to improve treatments and find cures. In July, AKF hosted a webinar on advocating for a rare disease. AKF’s recent webinar on rare-disease advocacy is available for on-demand viewing on AKF’s website.

AKF’s expanded rare disease resources are made possible thanks to educational grants from Alexion Pharmaceuticals, Mallinckrodt Pharmaceuticals and Sanofi Genzyme.

About the American Kidney Fund

As the nation’s leading nonprofit working on behalf of the 30 million Americans with kidney disease, the American Kidney Fund is dedicated to ensuring that every kidney patient has access to health care, and that every person at risk for kidney disease is empowered to prevent it. AKF provides a complete spectrum of programs and services: prevention outreach, top-rated health educational resources, and direct financial assistance enabling 1 in 5 U.S. dialysis patients to access lifesaving medical care, including dialysis and transplantation.

For more information, please visit KidneyFund.org, or connect with us on Facebook, Twitter and Instagram.