About PCH2

PCH2 means pontocerebellar hypoplasia type 2.

PCH2 is a rare genetic disease.

This means that:

  • very few people have it
  • you have it from birth

PCH2 is a very serious disease: it has a big effect on people’s lives.

There is no treatment for PCH2 yet.

Children with PCH2 need a lot of help from:

  • families
  • doctors
  • other medical staff

Giving people information about PCH2

Families all over the world have questions about PCH2.

They worry a lot, and there is very little information about the disease.

We want to change that, so we started PCH2cure.

PCH2cure provides an online platform for people from all over the world, where:

  • experts can share their knowledge about PCH2 
  • families with PCH2 children can share their experiences
  • people can learn about PCH2

A treatment for PCH2

We also want to find a treatment for PCH2.

We want to achieve this by 2030.

To make this happen, we will work with:

  • families of PCH2 children
  • doctors who help PCH2 children
  • researchers who want to understand PCH2

Help us find a treatment

Finding a treatment for PCH2 will cost a lot of money.

We need people to give us donations.

If we have more money, we can help people more quickly.

Some well-known people have already supported us with donations.

For example:

  • PCH2cure gets money from the Chan Zuckerberg Initiative.
  • PCH2cure also won the Eva Luise Köhler Research Award.

Parents and experts are working together 

We started PCH2cure in 2019.

Families with PCH2 children campaigned for the Foundation.

Freiburg and Tübingen universities were also involved.

Parents and experts work together at PCH2cure.

Please help us, so that PCH2cure’s work can continue.