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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).
What are the aims & objectives?
To collect information on the latest developments in the understanding, management and treatment of Gaucher Disease and to disseminate such information to all parties who have an interest in Gaucher Disease and other similar disorders.
To provide information support guidance and encouragement to groups of individuals representing Gaucher patients throughout Europe and elsewhere in the world.
To represent the interests of Gaucher patients to European and International organisations and bodies and to ensure that the voice of the Gaucher Patient is heard at all times.
To encourage and promote scientifi c and medical research into Gaucher Disease and improved therapeutic approaches and to seek to ensure all such research recognises the centrality of the Gaucher Patient.
To work with the medical and scientific community to defi ne priorities in the understanding of Gaucher Disease its management and treatment.
To work with, facilitate, support and encourage the activities of the European Working Group on Gaucher Disease (EWGGD) and other organisations or working groups with similar objectives.
To be a forum to address ethical issues arising from the study of Gaucher Disease its management and treatment.
To ensure that appropriate treatment is available to all patients with Gaucher Disease who require treatment regardless of race, creed, colour ethnic origin or national or religious background.