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The CEPT was set up last year for the benefit of Gaucher disease patients at high-risk for the development of progressive disease or complications and without access to alternative treatments during the period of Cerezyme shortage CEPT will be reinstated now due to prolonged shortage of Cerezyme supplies and based on a recommendation of the European Medicine Agency (EMA).
European Gaucher Alliance
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) and Budapest, Hungary (2008) 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 receive treatment through ECAP.
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.