Category: News

News on startpage

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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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.

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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.

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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.

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Patient Brochure 2.0

12.09.2024

Natural History of Pontocerebellar Hypoplasia Type 2 – A Guideline for Parents and Those Interested After the patient brochure 1.0 from 2014, we are now pleased to present the current…

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Family Portrait Toddler

19.07.2024

„A child with PCH2 changes you for the better“ Lisa, the mother of little Max, talks about her journey to a diagnosis and her initial difficulties in feeding Max properly….

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Family Portrait Schoolchildren

02.05.2024

„There is a lot of happiness to be found on this journey, but it doesn’t compare to what could/should have been“ In this interview, Anna and Paolo talk about their…

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Family Portrait Young Adults

01.05.2024

„Finding your own way“ In this interview, pediatrician Nellie from Germany talks about the long journey to her daughter Linn’s diagnosis and her search for a path for her and…

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Family Portrait Toddler

01.05.2024

„You can do so much more than you think“ Anna from Germany talks with love about her family’s journey, her son Ole, and her sick daughter Nele. She tells of…

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