All news items of Aimee Casey

Several Endo-ERN members are ambassadors for rare disease at the European Society for Paediatric Endocrinology Rare Disease Advisory Committee. They recently sent a letter to [...]

The second call for applications for the Endo-ERN Clincial Exchange Programme is now open! Early application is encouraged with the call closing on 30 November, [...]

European Partnership Opens a New Era in Rare Disease Research The European Rare Diseases Research Alliance (ERDERA) kicks off this September, with an estimated budget [...]

Loren van der Hoeven, MD and PhD candidate at Amsterdam UMC was invited by Endo-ERN ePAG Johan de Graaf of the Dutch Pituitary Foundation to [...]

The European Commission is hosting workshops in several countries with a focus on patient rights in cross-border healthcare and European Reference Networks. There are 2 [...]

The Joint Action on Integration of ERNs into National Healthcare Systems (JARDIN) project has put out their first Bullet Point Newsletter. JARDIN is a huge [...]

The Cross-Border Access to Paediatric Clinical Trials Working Group (WG) created by the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA) is [...]

EURORDIS recently published the results of their full Rare Barometer survey which can be found here. The key findings are available in multiple languages. Key [...]

Just published Bardet-Biedl syndrome improved diagnosis criteria and management: Inter European Reference Networks consensus statement and recommendations . Four European Reference Networks (ERN-EYE, ERKNet, Endo-ERN, [...]

Endo-ERN ePAG Bernd Rosenbichler shared a recent event organised by a local representative that featured his talented son Ben. “Erich Irlstorfer, member of the German [...]