European Working Group on Gaucher Disease
The European Working Group on Gaucher Disease (EWGGD) was founded as a "daughter" organisation of the European Study Group on Lysosomal Diseases (ESGLD) in 1993 and it held its first workshop in Trieste in 1994. The workshop was a resounding success bringing together scientists and clinicians who had an interest in and experience of studying and treating Gaucher patients. They presented their data and shared their clinical practice, research aspirations and the impact of the recently licensed (in the USA) Enzyme replacement therapy. Unique in the arena of scientific/medical meetings, the organisers of the EWGGD Chairman Prof Hans Aerts and Vice Chairman Prof Timothy Cox invited representatives of the emerging National patient groups to attend the meeting and make a short presentation at its closing session.
The EWGGD expresses its aims "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 The opportunity for presenting unpublished scientific data as well as free discussion is a central premise of the Group.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.
The EWGGD has held meetings in Maastricht (1997), Lemnos (1999), Jerusalem (2000), Prague (2002), Barcelona (2004), Cambridge (2006), Budapest (2008), Cologne (2010), Paris (2012) and Haifa (2014). Its next meeting will take place in Zaragoza in June 2016. At each meeting patient representatives are invited to attend and this has led to the coming together and the formation of the International Gaucher Alliance (IGA) who now build their biennial meetings around the EWGGD meetings.
The EWGGD has been at the forefront of addressing issues of major concern to Gaucher patients. It has held special meetings of sub groups leading to the publications of papers including the formation of a European Consensus on the treatment of Neuronopathic Gaucher patients, and held an emergency meeting to address the the managent of the global shortage of supply of Cerezyme Enzyme Replacement therapy and the priorities for treatment of patients on the reinstatement of limited supplies.
At the Cologne meeting the EWGGD voted to create a formal structure for the EWGGD and an interim board was elected charged with the responsibility of creating a constitution and driving the EWGGD forward. Prof Stephan Vom Dahl was elected Chairman. It was agreed that the Board would include a representative of the IGA: Jeremy Manuel.
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