The European Working Group on Gaucher disease (EWGGD) was launched as an affiliate of the European Study Group on Lysosomal Diseases (ESGLD). At the ESGLD meeting in Delphi in 1993, the founding of the Group was proposed by Prof. Dr. J.M. Tager, professor of Biochemistry and Prof. dr. R. Goudsmit, professor of Haematology and supported by the president of the ESGLD, Prof. K. von Figura.
The EWGGD had its first workshop in 1994 in Trieste. Following meetings were in Maastricht 1997, Lemnos 1999, Jerusalem 2000, Prague 2002, Barcelona 2004, Cambridge 2006, Budapest 2008 and Amsterdam 2010. The next European Working Group on Gaucher disease (EWGGD) meeting is planned for June 25 – 28 in Haifa.
Missions
The aim of the EWGGD is to promote clinical and basic research into Gaucher disease for the ultimate purpose of improving the lives of patients with this disease; it brings together clinicians, scientists and patients in an open forum for discussion on all aspects of the condition.
The opportunity for presenting unpublished scientific data as well as free discussion is a central premise of the Group. For the dissemination of information a two yearly workshop is organized. Although a limited number of representatives from industrial partners are invited to attend the meetings, the Working Group has always been an independent organization with a charitable purpose.
Representatives
The EWGGD represents clinicians and researchers with an interest in Gaucher disease. The EWGGD is affiliated to the European Gaucher Alliance (EGA), representing the interests of the patients. This alliance was formed shortly after the founding of the EWGGD and reached a more formal status in 2008, when during the EGA meeting patient representatives of 24 countries unanimously agreed to incorporate the EGA into a formal charitable body, to speak for Gaucher patients on a Pan European level.