Press release

American Kidney Fund Expands Rare Disease Resources with New Primary Hyperoxaluria Campaign

ROCKVILLE, Md. (February 23, 2021) — As the nation prepares to observe Rare Disease Day on Feb. 28, the American Kidney Fund (AKF) today announced a new awareness and education campaign focused on primary hyperoxaluria (PH), a rare disorder that can cause recurrent kidney stones and often results in kidney failure. The campaign will increase understanding and awareness of PH types 1, 2 and 3, with a particular focus on PH1, the most prevalent and severe of the three types. AKF developed the campaign with support from Alnylam Pharmaceuticals Inc., and developed the campaign content in partnership with the nonprofit Oxalosis & Hyperoxaluria Foundation (OHF).

PH is a rare genetic disease that originates in the liver and causes a waste product called oxalate to build up in the body. This buildup affects multiple organs, especially the kidneys, where patients experience chronic kidney stones. Over time, these recurrent kidney stones and the damage caused to the kidneys by calcium oxalate crystals can lead to kidney failure and, ultimately, multiorgan dysfunction. As many as 1 in 58,000 individuals worldwide are affected by PH, with PH1 accounting for approximately 80% of cases. People of any age can develop PH, and children who develop kidney stones should be evaluated for the disorder. Once the disease has progressed to kidney failure, patients require ongoing dialysis treatment to survive. If patients have a transplant, they must undergo a combined liver/kidney transplantation to correct the defect in the liver so that the transplanted kidneys can function without damage.

"People living with primary hyperoxaluria need access to credible information and resources about the disease, and people who are undiagnosed but suffering from symptoms need to be aware that they could be at risk," said LaVarne A. Burton, AKF president and CEO. "We are grateful to Alnylam and the Oxalosis & Hyperoxaluria Foundation for their support in helping us to expand our educational resources on this vital topic and to provide people with PH the tools they need to encourage their family members to get tested for PH before kidney damage occurs."

"The OHF is dedicated to making sure that no one is missed in diagnosis, treatment and care for PH. We are excited about these new resources, which will help give those living with the disease the opportunity to learn more," said Kim Hollander, OHF executive director. "We are incredibly excited to partner with AKF to help expand awareness and outreach for PH.

AKF's PH campaign will provide educational information on PH, as well as resources to foster conversations between already-diagnosed patients and their families about the heritable nature of the disease, with the goal of encouraging genetic testing. Among the new educational resources from AKF are a new PH webpage, a patient-family discussion guide, and a downloadable infographic that explains PH, its symptoms and how to manage the disease to slow the progression of kidney damage. Resources can be found at or on OHF's website.

About the American Kidney Fund

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. One of the nation’s top-rated nonprofits, AKF invests 97 cents of every donated dollar in programs, earning the highest 4-Star rating from Charity Navigator for 20 years in a row as well as the Platinum Seal of Transparency from Candid, formerly GuideStar.

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