Rare Daily Staff

The American Kidney Fund said it has significantly expanded the information on its website to better address rare diseases that can lead to chronic kidney disease and end-stage renal disease.

The expanded rare disease section of organization’s website includes information links to resources and support groups for 17 rare conditions that involve or cause damage to kidney function.

“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 Burton, president and CEO 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. Funding for the expansion to the website came from education grants from Alexion Pharmaceuticals, Mallinckrodt Pharmaceuticals and Sanofi Genzyme.

September 10, 2018
Photo: LaVarne Burton, president and CEO of the American Kidney Fund

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