Category: Uncategorized

Family Portrait “PCH Angels” and Adult PCH Patients

03.04.2025

“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.

Read post

Family Portrait “PCH Angels”

14.03.2025

In this interview, Judith talks about her older daughter Lotti, who passed away shortly before her 7th birthday.

Read post

Video for Rare Disease Day: Living with PCH2

03.03.2025

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.

Read post

CZI Funding of PCH2cure Continues

14.01.2025

The Chan Zuckerberg Initiative (CZI) is now officially funding the PCH2cure project for a second round.

Read post

Embrace the colorful journey

19.11.2024

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…

Read post

Cruise4Life – „Ship Ahoy, Cast Off!“

13.11.2024

Finally, on 27 August 2024, the time had come for us, the PCH FAMILY, to set sail from Kiel on board the AIDAnova. One week of cruising the Kattegat and Skagerrak lay ahead of us, and nobody could begin to imagine the experiences we would have together.

Read post

Cerebellar conference Heidelberg

31.10.2024

From September 11 to 13 2024, the conference “Cerebellar Development and Disease at Single-Cell Resolution” took place in Heidelberg.

Read post

National Ambassadors Wanted

15.10.2024

It takes the commitment of many people to raise awareness of a disease as rare as PCH2, help find supporters and provide the best possible support for patients and their families.

Read post

Gem of Humanity

09.10.2024

“Humanity is a skill that must be learned and his classmates were able to learn it from him.”
(Elementary school teacher Ms. S.)

You don’t really need more of an argument for inclusion.

Read post