Talkative without words

“Stop that nonsense! I am Joris. Please leave out “He can’t talk” Everyone has experienced it. That you want to say something, but cannot find the right words. But what if you are very outgoing, a talkative soul, but have no words at all?...
Prof. Dr. Clara van Karnebeek new member of Advisory Board

Prof. Dr. Clara van Karnebeek new member of Advisory Board

Recently Prof. Dr. Clara van Karnebeek has joined the Advisory Board. Clara is a pediatrician and geneticist, associated as a professor of metabolic diseases at the Radboudumc and Amsterdam UMC. She is interested in neurometabolic disorders, and specifically the...
Devote yourself!

Devote yourself!

Chance for PKAN ChildrenĀ 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 developing a substance that...
Establishment (Scientific) Advisory Board

Establishment (Scientific) Advisory Board

We are very happy and proud to introduce the first member of the (Scientific) Advisory Board of Stichting Kans for PKAN Children: Professor Ody Sibon! For many PKAN patients and their relatives, her name is known for the research she is conducting together with Dr....
The fight of a family against PKAN

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/