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At the moment there is no cure for children with PKAN. Most of them will not get older than 15 years old. Whereas it initially seemed as though there was no cure, there is now a research well on the way and the solution is close at hand. Together we are going to make that happen. Feel strong and support us!
Raised so far:
PKAN (Pantothenate Kinase-Associated Neurodegeneration) is a rare, progressive, inherited neurological movement disorder characterized by the progressive degeneration of specific regions in the central nervous system (neurodegenerative disorder). PKAN is the most common type of neurodegeneration with brain iron accumulation (NBIA), a group of clinical disorders marked by progressive abnormal involuntary movements, alterations in muscle tone, and postural disturbances. In most cases, progression of the disease extends over several years, leading to death in childhood or early adulthood in classic cases.
PKAN affects males and females in equal numbers. The symptoms typically develop during childhood, although occasionally they begin during late adolescence or adulthood. Cases in infancy and of adult onset have also been reported.
The frequency of PKAN is estimated to be one to three per million individuals worldwide. Because rare disorders like PKAN often go unrecognized, these disorders may be under-diagnosed or misdiagnosed, making it difficult to determine the accuracy of these estimates.