Website: http://www.gaucheralliance.org
Finances:
Objects:
"the objects for which the company is established are the relief of sickness and the preservation of health amongst people suffering from the rare genetically inherited condition of gaucher disease wherever they are in the world (""objects"") and in doing so the company will: 1.1 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;1.2 provide information support guidance and encouragement to groups of individuals representing gaucher patients globally;1.3 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.1.4 encourage and promote scientific 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.1.5 work with the medical and scientific community to define priorities in the understanding of gaucher disease its management and treatment.1.6 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.1.7 be a forum to address ethical issues arising from the study of gaucher disease 1.8 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; and1.9 carry out any other activities that advance the objects."
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