Animation: “After the Diagnosis”
The first animation of the Kans for PKAN Children foundation is a fact! Today, it will premiere on Rare Diseases Day 2020. The animation dwells on information that is needed when you as parents have just heard the diagnosis PKAN for your child. In the future, a...
Safe travels, dear Joran
Joran had only just turned 17 when he passed away on February 3, 2020, peacefully and in the arms of his dear mother. The battle was over, he could not take it any longer and was completely exhausted. His beautiful, exuberant smile, which has given great joy to his...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
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...