American Kidney Fund Website Now Includes Information on Alport, Other Rare Kidney Diseases

The American Kidney Fund (AKF) has expanded the information available on its website, now covering 17 rare diseases assocated with chronic kidney disease (CKD) and end-stage renal disease (ESRD), including Alport syndrome.

This was made possible by the support of several educational grants from Alexion Pharmaceuticals, Mallinckrodt Pharmaceuticals, and Sanofi Genzyme.

AKF is a leading nonprofit association that works on behalf of about 30 million individuals with kidney diseases who live in the U.S. It is committed to helping kidney disease patients access proper health care, as well as empower those at risk of acquiring a kidney disease to prevent it.

On the AKF website, patients, their families, and healthcare providers can find a broad array of health educational resources, information regarding dialysis and transplantation, direct financial assistance, and links to support groups, along with other useful information.

“Coping with a rare kidney disease presents significant challenges to patients and families, and information on rare kidney diseases can be difficult to find,” LaVarne A. Burton, president and CEO of the American Kidney Fund, said in a press release. “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.”

AKF’s website now has information dedicated to patients affected by rare diseases — those estimated to affect fewer than 200,000 individuals nationwide — including:

• Atypical hemolytic uremic syndrome: a medical condition that promotes the formation of blood clots primarily affecting the kidneys, and consequently causing CKD and ESRD over time.
• Alagille syndrome: a genetic disease that causes impaired transport of bile from the liver to the intestine to help fat digestion, mainly characterized by liver damage but also affecting other organs including the kidneys.
• Alport syndrome: a genetic condition that impairs the normal structures of kidney, significantly affecting filtration function.
• Amyloidosis: a group of illnesses characterized by the accumulation of abnormal, toxic protein aggregates in different organs including the kidneys, causing damage.
• Cystinosis: a disease caused by the accumulation of a protein unit called cysteine in the body, leading to permanent kidney damage.
• Fabry disease: a genetic disease caused by the loss of a particular enzyme, causing abnormal accumulation of waste inside cells.
• Glomerulonephritis: characterized by the acute inflammation of the filtration units of the kidneys.
• Granulomatosis with polyangiitis (formerly called Wegener’s granulomatosis): a rare form of blood vessel inflammation caused by overproduction of antibodies that attack the body’s own tissues.

Information on these disorders is available at this link.

Besides the educational aim of the website, the AKF also works with patients who have rare diseases to advocate for improved awareness and increased research funding for the development of new treatments and potential cures.

Additional information on AKF’s advocacy work can be seen on its most recent webinar on rare disease advocacy, which is available for on-demand viewing here.