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 honoured 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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