On January 14th, 2019, a Clinical Patient Management System meeting is took place at the University Medical Center Groningen (UMCG) in Groningen, The Netherlands.
To improve the realisation of clinical trials within the network, and adequately adapt the protocols to patients' expectations, MetabERN wishes to understand your perception of clinical trials.
Today, the first EU patients can use ePrescriptions issued by their home doctor when visiting a pharmacy in another EU country.
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point Rare Disease Day in their life.
ERN Clinical Patient Management System Webinar to introduce CPMS 17.0 to be held for all ERN Members. CPMS 17.0 will be released at the beginning of March.
Call for collaboration on ultra-rare disorders of sulfur metabolism
This 15th annual symposium is designed for basic, translational and clinical researchers, patient advocacy groups, clinicians, and all others who are interested in learning more about the latest discoveries related to lysosomal diseases and the clinical investigation of these advances.
3rd International Homocystinurias Patient-Expert Meeting on Thursday 28th February – Friday 1st March 2019 in Rome, Italy.
RARE2019 will follow on from the success of its predecessor, addressing the challenges of Rare Diseases Treatments as well as new therapies on the horizon. It will expand on so-called "generic topics", such as clinical trials' design, funding for research, digital health, big data on the one hand and focusing on the individual patients for innovation in both drug development and management.
Annual MetabERN Board meeting starting on Thursday 4 April (start time 14.00) to Saturday 6 April (finishing at 13.00).