Category: Families

Meeting of the “Rare as One” network in Nevada, USA

11.07.2025

In June 2025, Dr. Julia Matilainen, representing the PCH2cure-project, attended the “Rare as One” meeting of the Chan Zuckerberg Initiative in Nevada, USA.

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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.

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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…

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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.

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We are live!

30.04.2024

On May 2, 2024, we went live at www.PCH2cure.org – the new knowledge and exchange platform for pontocerebellar hypoplasia type 2. We hope all visitors to this website gain exciting…

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Trial Cruise In The Mediterranean From 21-25.10.2018

Cruise4Life – Showing the World to Our Children and Our Children to the World

24.04.2024

In July 2024, 28 PCH children and their families will set off on Cruise4Life, a one-of-a-kind research cruise. Lots of doctors and researchers from the PCH2cure project will spend a…

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