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- 10-04-2018Advocacy Training Grant
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As a former pan-European group the EGA is keen to engage with all European institutions as well as other institutions around the world to ensure that Gaucher patients are represented at all levels. The EGA is fortunate that Dr Peter Liese MEP a Patron of the German patient group invited the Board of the EGA to formally launch the EGA at the European parliament in February 2009. A special meeting was held where the EGA's Chairman, Jeremy Manuel, presented the background of the EGA to assembled MEPS and guests. The Board were able to attend a plenary session of the committee on Environment Public health and food safety where relevant issues such as rare diseases and cross boarder healthcare were being discussed and took the opportunity to meet MEPs and representatives of the European Commission.
The EGA has attended meetings with EWGGD representatives to discuss the formation of a European Registry for Gaucher patients which is a goal of both bodies.
The EGA is actively working with the European Medicine Agency (EMA) and board members have given evidence before the Committee for Orphan Medicinal products and have engaged with officials for the benefit of Gaucher patients.