The 2nd PCH Research Network Meeting took place at the Karlsruhe Institute of Technology (KIT) in May 2025. International researchers, physicians and employees of the PCH2cure project came together in Karlsruhe, Germany.
In June 2025, Dr. Julia Matilainen, representing the PCH2cure-project, attended the “Rare as One” meeting of the Chan Zuckerberg Initiative in Nevada, USA.
“He won’t be able to play football with you, but he will cheer you on!”
These are the words with which the parents of Tim, now 3 years old, explained the condition of the newborn family member to his two older brothers.
“What helped most was the endless love for my children”. Brigitte from Germany is the mother of Leonard and Kilian, both of whom have PCH2. Leonard died in 1995 at the age of nine months. Kilian was born in 1996 and is now 27 years old.
February 28, 2025 was Rare Disease Day. To mark this day, the University Hospital of Tübingen made a short video together with Axel Lankenau, father of two sons with PCH2.
On January 20, the core scientific team of PCH2cure met with scientists and physicians from Tübingen, Freiburg and Karlsruhe at the Karlsruhe Institute of Technology (KIT) to discuss new projects and set goals for the year 2025.
Artist with PCH2 “My name is Damien and I am a disabled artist.” This is how 29-year-old Damien from Canada introduces himself on his website. But Damien doesn’t just have…
