The 5th International GSD Conference (IGSD2019), taking place in Porto Alegre from 14-16 November 2019.
The 5th International GSD Conference (IGSD2019), taking place in Porto Alegre from 14-16 November 2019.
1st MetabERN Annual Meeting 2017: kick off meeting Attached documents
MetabERN Annual Meeting : The Work done in Work Package 7 Attached documents
Home: Founded in May 2016 by cystinosis groups from eight European countries we promise to work fast, so you will see here some more information soon. Curious? You can download our flyer here for a first information. Contact Please use our address to contact us: Cystinosis Network Europe Beuthener Straße 15 D-40883 Ratingen Germany Tel. […]
CDG Patient Groups and Advocates “Nothing about us, without us”- James Charlton Patient, family members and patient advocacy groups refused to be passive victims by welcoming and supporting any initiative to the rare disease landscape that are seriously committed to developing safe, effective treatments for patients. Due to the specificities of rare diseases, patients and […]
Where families’ own needs and ideas are transformed into research projects. Our research model: Fomenting the research on rare diseases is essential to pave the way for therapeutic approaches and development, since for most of the patients there is still no treatment. In addition, experience says that any knowledge on the mechanism underlying rare diseases […]
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.
This Winter School is organised as part of the “Next Generation Life Scientists” Graduate School of Research.