MetabERN held its first meeting with Patient and Family Associations on the 13th of January 2018.
CDG & Allies - PPAIN are very pleased to inform the lauch of the 4th edition of the Liliana Scientific Initiation Scholarship.
We were deeply saddened to hear that the brave and inspiring Christine Lavery passed away on Tuesday 19th December 2017 in hospital surrounded by her family, following a brief illness. Christine has played an outstanding role in our Lysosomal storage diseases community and for the entire field of rare inherited diseases.
The European Commission (DG SANTE), on November 20th 2017, launched the First Clinical Patient Management System. It’s a web-based application aimed at supporting ERNs in improving the diagnosis and treatment of rare or low prevalence complex diseases across national borders of Member States in Europe. By providing tools for collaboration and virtual consultations CPMS enables […]