The 7th radiz Rare Diseases Summer School will take place at the Kartause Ittingen, Warth (Canton Thurgau), Switzerland and will focus on a wide variety of subjects in the arena of rare diseases, from disease mechanisms and animal models, to improving diagnoses, to novel therapeutics.
In this Satellite Meeting, professionals will discuss the necessity for a clear CDG definition, the CDG Nomenclature and Nosology (classification of a list of diseases).
4th World Conference on Congenital Disorders of Glycosylation (CDG) for families and professionals: "The CDG road: from diagnosis to therapies" Lisbon, Portugal - 26 and 27 July 2019.
The SSIEM 2019 Symposium will be held at the De Doelen, in Rotterdam, 3-6 September. The theme for this year's congress is Building Bridges.
The 5th International GSD Conference (IGSD2019), taking place in Porto Alegre from 14-16 November 2019.
On 7th December the European Medicines Agency hosted the 16th joint meeting with the European network for Health Technology Assessment (EUnetHTA). EMA and EUnetHTA have been holding regular dialogues since 2010 and they are an opportunity to progress the EMA/EUnetHTA work plan.
On November 21 and 22, the 4th Conference on European Reference Networks took place in Brussels, Belgium.
On November 3rd the first meeting of the subnetwork for Lysosomal Storage Diseases (LSDs) of MetabERN will take place in Rotterdam, the Netherlands.
We successfully managed to create the Patient Board, which represents 44 patient groups established in 17 countries across all disease areas covered by MetabERN. We have therefore formed a Patient Steering Committee that will work hand-in-hand with the Medical Steering Committee to ensure that MetabERN is a truly person-centered European Reference Network. Now that a sound governance structure is in place, we are developing an Action Plan that will be discussed at the next Patient Steering and Executive Committees Meeting on 12 January in Brussels.
This Winter School is organised as part of the “Next Generation Life Scientists” Graduate School of Research.