Published in:
01-03-2017 | Letter to the Editors
The galactosemia network (GalNet)
Authors:
M. E. Rubio-Gozalbo, A. M. Bosch, A. Burlina, G. T. Berry, E. P. Treacy, Steering Committee on behalf of all Galactosemia Network representatives
Published in:
Journal of Inherited Metabolic Disease
|
Issue 2/2017
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Excerpt
The three main determinants for a significant research activity level in a rare disease are the existence of patient organizations, patient registries and international networks. In line with this an international network for the galactosemias—GalNet—was established in 2012 (
www.galactosemianetwork.org). It includes professionals from 18 European countries, Israel, the United States and Australia and it was founded with the financial support of the European Galactosemia Patient Society and several national grants. Our activities are funded with grants from different national organizations. This network is not linked to a pharmaceutical or nutritional company. …
