European Gaucher Alliance

Aims of the European Gaucher Alliance

1. To exchange relevant information including:
   a) information aboiut the treatment and management of Gaucher disease.
   b) research being carried out in member countries and elsewhere.
2. To keep member organizations aware of developments in member countries and elsewhere.
3. To encourage multinational research into Gaucher disease.
4. To act as liaison between patients and the European Working Group on Gaucher Disease.
5. To encourage the formation of patient associations within European countries and invite them to join the European Gaucher Alliance.
6. To represent the interests of Gaucher sufferers to the European Union, other european alliances and other relevant organisations.
7. To represent the interests of Gaucher sufferers wherever they appear on the European level and in particular to ensure:
   a) the adequate availability of treatment.
   b) that the voice of the Gaucher patient is heard wherever relevant.
8. To be a resource for all the Gaucher patient associations worldwide whenever needed.
9. To encourage research for a better therapy worldwide.

These aims were agreed at the European Gaucher Alliance meeting in Trieste, Italy in 1994 and items 8 and 9 were agreed in Lemnos, Greece in 1999 and all the aims were confirmed in Jerusalem in 2000.

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Last updated 19 February 2007 © Copyright European Gaucher Alliance 2007.