Lea Hüper holds an MSc in Neuroscience and has experience in clinical and preclinical research. In the PCH2cure project, she coordinates the exchange between team members from research, clinical practice, and patient organizations. Additionally, she writes texts for the PCH2cure website and produces the newsletter.
Rare Disease Day is observed every year on February 28th. It is a day for global action, raising awareness and rallying support through events like the Rare Disease Run in Karlsruhe.
On February 9, the PCH2cure core scientific team, including researchers and clinicians from Tübingen, Freiburg, and Karlsruhe, met at the Karlsruhe Institute of Technology (KIT) to discuss new projects and set goals for 2026.
We are very pleased that our colleague, Dirk Strecker, was recently awarded the Order of Merit of the Federal Republic of Germany. Several local media outlets reported on this (in…
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.
