Home Local & global Contacts

Local & global Contacts

Local & global Contacts
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PCH Patient Organizations, Physicians & Researchers Worldwide

Even though PCH2 is an extremely rare disease, there are people all over the world you can contact who might be just the right person to talk to in your area. PCH2 patient organizations, support groups on PCH2 and parent groups, physicians and researchers are listed here. You can contact them directly.

Pontocerebellar Hypoplasia Worldwide

The zoomable world map shows all contacts that we know and includes parents’ groups (support groups on PCH2), physicians and researchers. Click the symbols to see more details.

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Country-specific Contacts

We know of PCH patient organizations, institutes and people in the following countries who are happy to help with issues relating to pontocerebellar hypoplasia. This list explicitly includes contacts who do not (only) deal with PCH2 but also with other subtypes.

Austria

Local parents’ group

Forum & Support Group
Language: German
PCH-Type: PCH1 / PCH2 / PCH3 / PCH4/5 / PCH6 / CASK/MICPCH / other
Address: Gabriele-Münter Hof 13, 71034 Böblingen, Deutschland
Active in: Germany, Switzerland, Austria

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.

Contact person: Axel Lankenau

Germany

Doctors

Clinical expertise PCH2A and other rare neuropediatric disorders, Natural History Study PCH2, Biobank
Specialization: Neuropediatrics and Muscular Disorders
Language: German, English
PCH-Type: PCH2
Active in: Germany

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.

Contact person: PD Dr. Wibke Janzarik

Local parents’ group

Forum & Support Group
Language: German
PCH-Type: PCH1 / PCH2 / PCH3 / PCH4/5 / PCH6 / CASK/MICPCH / other
Address: Gabriele-Münter Hof 13, 71034 Böblingen, Deutschland
Active in: Germany, Switzerland, Austria

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.

Contact person: Axel Lankenau

Italy

Local parents’ group

Language: Italian
Active in: Italy

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

Contact person: Anna Spreafico

Switzerland

Local parents’ group

Forum & Support Group
Language: German
PCH-Type: PCH1 / PCH2 / PCH3 / PCH4/5 / PCH6 / CASK/MICPCH / other
Address: Gabriele-Münter Hof 13, 71034 Böblingen, Deutschland
Active in: Germany, Switzerland, Austria

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.

Contact person: Axel Lankenau