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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:

 

€ 27093,68

 

Devote yourself!

Chance for PKAN Children Foundation raises funds to support academic research that can lead to a cure for PKAN. One of those studies is the work of Prof. dr. Dr Ody Sibon (UMCG) and Prof. dr. Susan Hayflick (OHSU, USA). They are very busy...

The fight of a family against PKAN

When both parents have a gen deviation, a child born has 25% chance to have PKAN. All three of the children of family Kulsrud have PKAN. Read their poignant story: https://globalgenes.org/raredaily/a-familys-fight-against-pkan/

Grandma tells her story about the fight for her 8-yearold grandson

To get an impression what the PKAN disease is all about, every day another battle… We thank Janis Healey, grandma of Riley (8 years old), for her openness and effort to raise funding for a cure against PKAN. Worldwide everyone is putting in all...

Jan Lammers drives rally for PKAN children

October 7th 2017 Jan Lammers collected 120.000 euro together with 100 participants with the ZZF-rally for the purpose of research to fight PKAN. A great cause!

Pionier Patty Wood over NBIA Disorder Association

Patty Wood has founded the NBIA Disorder Association which fights against diseases which occur after accumulation of iron in the brain, which like PKAN is part of NBIA: Neurodegeneration with Brain Iron Accumulation. This is the story of this...

About PKAN

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.