Press release

American Kidney Fund Launches New Education Initiative for People Living with Cystinosis and Their Families

Digital and print resources focus on rare disease that causes kidney dysfunction in infants and children

ROCKVILLE, Md. (Feb. 24, 2020) – The American Kidney Fund (AKF) today announced a new educational initiative to support people living with cystinosis, a rare, multisystem genetic disease that leads to kidney failure in the majority of people living with the disease.

The AKF initiative, supported by a grant from Horizon Therapeutics plc, will provide patients and their caregivers with expanded content on AKF's website and digital communications, including information about preparing pre- and post-transplant. A patient and caregiver information toolkit that empowers patients to adhere to treatment, prepare for transplant and life post-transplant, and engage them in staying as healthy as possible is being distributed to specialists. The toolkit was developed in cooperation with the Cystinosis Research Network and has sections with information specifically for parents and teens. Both can be downloaded from AKF's website.

The most common and severe form of cystinosis causes kidney failure in children by about age 10, and most children with cystinosis will eventually need a kidney transplant. The majority will need two or more transplants in their lifetime, because a transplant does not cure cystinosis. AKF's educational materials will help families understand the process of getting kidney transplants for their children. It offers practical information on helping their children cope with the lifestyle, setting up a caregiving team, what to tell the school when the child needs to take time off, and transitioning responsibility to the child as they reach adulthood.

"Cystinosis occurs in only about 1 in 100,000-200,000 children, so it is not widely known or understood," said LaVarne A. Burton, president and CEO of the American Kidney Fund. "We recognize parents may be overwhelmed when their child is diagnosed with this rare disease, and we are designing our education resources to help them navigate their most pressing questions, including how to help their child prepare for the eventuality of a kidney transplant. We are grateful to Horizon for its support in this important effort."

"Horizon is passionate about positively impacting the lives of people living with rare diseases, like cystinosis, and proud to support the educational programs led by the American Kidney Fund," said B.J. Viau, director, patient advocacy, Horizon. "Families impacted by cystinosis are the true experts of the condition and we hope these materials, created in partnership with the cystinosis community, can be added to the toolbox of resources."

About the American Kidney Fund

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nonprofit with the greatest direct impact on people with kidney disease. AKF works on behalf of 1 in 7 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. AKF fights for kidney health for all through programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy. AKF is one of the nation’s top-rated nonprofits, investing 97 cents of every donated dollar in programs, and holds the highest 4-Star rating from Charity Navigator for 21 consecutive years and the Platinum Seal of Transparency from Candid, formerly known as GuideStar. 

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