The international network for galactosemia – GalNet – was established in 2012. It includes professionals from 17 European countries, namely Austria, Belgium, Bulgaria, Croatia, Czech Republic, Estonia, France, Germany, Greece, Ireland, Italy, Lithuania, Netherlands, United Kingdom, Portugal, Spain and Switzerland, as well as Israel, the United States and Australia. The GalNet was founded with the great support of the European Galactosemia Society.
The GalNet focuses on the advancement of research, diagnosis, treatment and follow-up care of galactosemic patients by close collaboration among the various stakeholders, clinicians, researchers, nutritionists, and patients and families.
The GalNet key aims include:
1) development and implementation of a patient registry;
2) elaboration of evidence-based guidelines for diagnosis, treatment and follow-up;
3) outlining a transnational research approach based on international collaboration and coordination.
International networks are of outmost importance for rare diseases.
Through the GalNet, we will be able to improve patients’ treatment, education, and research, to ultimately provide a better care to all galactosemic patients.