Schwannomatosis and neurofibromatosis

Schwannomatosis and neurofibromatosis

Thematic group 1

Schwannomatosis and neurofibromatosis is a group of three conditions in which tumours grow in the nervous system. The tumours are generally non cancerous.

The three types are:

The cause is a genetic mutation in certain genes. In half of cases these are inherited from a person's parents while in the rest they occur due to spontaneous mutations. The tumours involve supporting cells in the nervous system rather than the neurons.

 
Thematic lead

The thematic lead for Neurofibromatosis is:

Ignacio Blanco Guillermo, Dr. Ignacio Blanco Guillermo, Hospital Germans Trias I Pujol - lnstitut Catala d'Oncologia, Barcelona in Spain.

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Patient representatives

Claas Röhl, chairman of the Austrian patient organisation for NF patients "NF Kinder", ERN GENTURIS Board member.

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João de Sousa e Silva, patient representative for NF2, NF Patients United

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Healthcare Providers with expertise in Thematic Group 1 schwannomatosis and neurofibromatosis

Country

City

Name of Healthcare Provider

Austria

Innsbruck

Medical University of Innsbruck*

Vienna

Medical University of Vienna *

Belgium

Leuven

University Hospital Leuven

Liege

University Hospital Liege

Czech Republic

Prague

Motol University Hospital

Denmark

Aarhus

Aarhus Universitetshospital

Copenhagen

Rigshospitalet

Finland

Helsinki

GENTURISFINSN consortium (HUS Helsinki University Hospital and OYS Oulu University Hospital)

Turku

The Hospital District of Southwest Finland, Turku University Hospital

Germany

Dresden

Hereditary Cancer Syndrome Center Dresden

Hamburg

Universitätsklinikum Hamburg-Eppendorf

Greece

Athens

Aghia Sophia Children's Hospital

Hungary

Pécs

University of Pécs

Italy

Milan

Fondazione IRCCS CA'Granda Ospedale Maggiore Policlinico

Milan

Fondazione IRCCS Istituto Neurologico Carlo Besta

Padua

Azienda Ospedaliera di Padova

Parma

Azienda Ospedaliero-Universitaria di Parma

Rome

Fondazione Policlinico Universitario A. Gemelli

Rome

IRCCS Ospedale Pediatrico Bambino Gesù

Netherlands

Rotterdam

Erasmus Medical Center

Portugal

Porto

Centro Hospitalar Universitário de São João - CHUSJ

Spain

Barcelona

Hospital Germans Trias I Pujol - lnstitut Catala d'Oncologia

Barcelona

Hospital Sant Joan de Déu

* These HCPs are Affiliated Partners of ERN GENTURIS