GENETIC / RARE DISEASES
European Galactosaemia Society (EGS) http://www.galactosaemia.com Secretary: Maaike van Kempen
c/o Jeroen and Maaike van Kempen Zandoogjelaan 4 NL-5691 RJ Son The Netherlands
T: 0031-499-477-509 F: 0031-499-464-383 Email: secretary@galactosaemia.eu
A support group for people with the rare metabolic disease galactosaemia. Shares information, promotes awareness, and encourages European research into the disease. Lobbies for better disclosure in the labelling of foods and pharmaceuticals, and for changes in European law which affect the galactosaemic patient.
“Although galactosaemia is a very rare disease, the EGS represents a relatively high number of galactosaemia patients in Europe—over 800”
Geographic remit: Europe. Membership: Member associations in 13 European countries (Austria, Belgium, Denmark, Estonia, France, Germany, Ireland, Italy, the Netherlands, Norway, Spain, Switzerland and the UK). Country of registration: The Netherlands.
EUROPEAN PATIENT GROUP DIRECTORY 2008 © BURSON-MARSTELLER / PATIENTVIEW
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