Local & global Contacts

We are happy to share our journey with PCH2 and link in with other families that are going through the same thing. We do our best to embrace life with this condition and be thankful for every day we have with Finn.

Since 2005, a parents’ group has been active in German-speaking countries that grew into the association PCH-Familie e.V. in 2018. The association promotes the exchange of information between families with children who have pontocerebellar hypoplasia and maintains the world’s largest knowledge base on PCH2 for patients through its bulletin board at PCH-Familie.de. PCH-Familie e.V. also supports research into the disease, including via the PCH2cure project, which led to the development of this web platform.

Prof. Gröschel is a senior physician in the Department of Neuropaediatrics at the University Children’s Hospital in Tübingen with a scientific and clinical focus on rare neurological diseases in children and cares for families and children with PCH2 in particular, but also other forms of PCH. In recent years, the Department of Neuropaediatrics in Tübingen has conducted scientific studies throughout Germany on the course of the disease, MRI changes and quality of life in children and families with PCH2.

In the department of Neuropediatrics and Muscular Disorders at Universitätsklinikum Freiburg patients with rare neuropediatric and neurogenetic disorders are diagnosed and treated on a regular basis. Dr. Janzarik provides clinical care for several patients with PCH2A and collected clinical data from 65 affected patients as part of the Natural History study from 2022. Additionally, Dr. Janzarik has a long-standing expertise with other rare disorders associated with severe multiple disabilities, dyskinetic movement disorders or epileptic seizures.

Since 2005, a parents’ group has been active in German-speaking countries that grew into the association PCH-Familie e.V. in 2018. The association promotes the exchange of information between families with children who have pontocerebellar hypoplasia and maintains the world’s largest knowledge base on PCH2 for patients through its bulletin board at PCH-Familie.de. PCH-Familie e.V. also supports research into the disease, including via the PCH2cure project, which led to the development of this web platform.

We are an informal group of families sharing their experiences in dealing with children with PCH.

The parent’s group exsists since 2021, shares life hacks in dealing with PCH children, shares information about latest research, promotes the pch2cure.org website and PCH2cure image film in different social networks.

Since 2005, a parents’ group has been active in German-speaking countries that grew into the association PCH-Familie e.V. in 2018. The association promotes the exchange of information between families with children who have pontocerebellar hypoplasia and maintains the world’s largest knowledge base on PCH2 for patients through its bulletin board at PCH-Familie.de. PCH-Familie e.V. also supports research into the disease, including via the PCH2cure project, which led to the development of this web platform.