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- 26-03-2019March Newsletter
- 06-03-2019Election of New Chair and Vice-Chair
Many physicians and scientists have played an active role in supporting and encouraging the work of patient groups. In 1994 the first meeting of the European Working Group on Gaucher Disease (EWGGD) was held in Trieste, Italy, and representatives of the known European patient groups including the Israeli Gaucher Association were invited to join with the doctors and scientists.While the patient representatives understood relatively little of the detailed science discussed, their presence was seen to encourage the professionals.
Patient representatives continued to attend EWGGD meetings in Maastricht, Holland, in 1997 and in Lemnos, Greece in 1999. During these meetings, the patient representatives took time to discuss their own priorities and concerns. It became apparent that the patient groups needed more time for discussion and at the fourth EWGGD meeting in Jerusalem, Israel (2000), a separate day was set aside for a special European Gaucher Alliance (EGA) meeting. At subsequent EWGGD meetings in Prague, Czech Republic (2002); Barcelona, Spain (2004); Cambridge, UK (2006); Budapest, Hungary (2008); Cologne, Germany (2010); Paris, France (2012); Haifa, Israel (2014) and Zaragoza, Spain (2016) the EGA held their own separate meetings to discuss issues of common interest.
Together with patient representatives from Russia, Ukraine, Bulgaria and Romania the EGA took on the role of negotiating for humanitarian aid with the Genzyme Corporation and in 2004, the company agreed the European Cerezyme Access programme which provides free treatment for severely affected patients whose health services cannot or will not meet the cost of treatment, to date 117 patients in 14 countries receive treatment through ECAP, the ECAP programme has now been incorporated in the International Cerezyme Access programme (INCAP).
At the EWGGD meeting in Budapest in June 2008, members of the EGA voted to become a formal constituted organisation and elected a formal board of directors. The EGA has since become an incorporated limited company registered in England.
At the EGA Biennial Members meeting in Zaragoza in June 2016, members of the EGA voted to remove the difference between 'full' and 'associate' members so that all adopted members of the EGA had equal rights. This vote was the first step to the EGA becoming an international organisation. Over ther next two years the board worked to develop a vision, mission and proposed new structure to take the IGA forward to serve the global Gaucher community, to meet their needs and address the challenges they face. We announced our new name and logo to our members during the 10th Biennial members meeting in Riga in October 2018.
The IGA has an office in England that provides administrative support and underpins the work of the directors.