AAKP Cystinosis Patient Education and Activity Scholarship Program
While a variety of factors may cause an individual to be diagnosed with kidney disease, genetic and rare causes can be especially difficult for patients and family members to manage. Understanding the need to support individuals who have kidney diseases caused by a genetic or rare condition, AAKP has expanded its education, advocacy efforts and services to those affected.
In support of AAKP’s Pediatric and Rare Disease Initiatives, we are pleased to offer the AAKP Cystinosis Patient Education and Activity Scholarship Program for those affected with cystinosis.
Cystinosis is a rare genetic, metabolic, lysosomal storage disease caused by gene mutations which results in an abnormal accumulation of the amino acid cystine in various organs and tissues of the body such as the kidneys, eyes, muscles, pancreas and brain. The cystine accumulation causes tissue and organ damage. Cystine accumulation can lead to kidney failure, muscle wasting, swallowing difficulty, diabetes, hypothyroidism, cerebral atrophy, photophobia, blindness, corneal ulceration, ventilatory impairment and more. Without treatment, children with cystinosis will usually develop end stage kidney disease (ESKD) or die prematurely. If cystinosis patients receive a kidney transplant, their new kidney will not be affected by the disease. However, without specific treatment, cystine accumulation can cause complications in other organs of the body.
The objective of the scholarship program is to provide an exclusive opportunity for people living with cystinosis to provide inspiration, further their education, and pursue opportunities toward long-term career goals and life aspirations.
This scholarship program is open to individuals diagnosed with cystinosis. Scholarship funds are available to age groups 5-17 years of age and 18+. Scholarship submissions are accepted year-round, however scholarships are awarded in November and June. Learn more and apply today by downloading the scholarship application.
This educational program is supported by an educational donation by Horizon Therapeutics. The AAKP is the sole owner and manager of this scholarship program. Identifiable applicant information with never be shared with program supporters. Click here to learn more about Horizon Therapeutics.
Visit the Cystinosis Research Network for additional education and resources about cystinosis.