Press release

American Kidney Fund Will Host Cystinosis Camp as Part of National Virtual Camp for Children and Teens with Kidney Disease

Virtual program is the only one of its kind for pediatric kidney patients

ROCKVILLE, Md. (May 8, 2023) — This fall, the American Kidney Fund will be offering special programming specifically for children with cystinosis during its much-loved national virtual camp for children and teens with kidney disease. The camp provides an opportunity for children and teens with kidney disease to participate in fun activities, as well as share their experiences with other children who are also battling kidney disease.

Cystinosis is a rare genetic condition that occurs in about 1 in 100,000-200,000 children and is not widely known or understood. Cystinosis happens when cystine, an amino acid, builds up in the body's cells. Too much cystine can damage a body's organs, and over time, cystinosis can lead to permanent kidney damage and kidney failure.

"Kidney disease can feel all-consuming, which often prevents many children with the disease from being able to relax, have fun and just enjoy being a kid," said LaVarne A. Burton, AKF President and CEO. "AKF is honored to host these virtual camps and give children with kidney disease the opportunity to enjoy themselves and connect with other children who are managing similar challenges. Having just recognized World Cystinosis Day on May 7, we're so pleased to announce this special opportunity for kids with cystinosis. We are grateful to Horizon Therapeutics for their generous sponsorship of this camp and our other cystinosis programming. We are also thankful to the Cystinosis Research Network for their leadership in supporting this patient community, and for their continued partnership with the American Kidney Fund."  

Up to 20 children and teens with cystinosis will be a part of the camp this year. The campers will participate in the regularly scheduled National Virtual Camp and will be invited to join two one-hour networking programs exclusively for children and teens with cystinosis. All sessions will be organized and moderated by AKF staff. Campers will receive a welcome bag full of supplies for the various camp activities and a tablet so they can join the virtual programs.

The National Virtual Camp's cystinosis-specific programming is made possible with the support of Horizon Therapeutics plc.

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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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