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.
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.
The European Reference Networks are featured in the Commission's EUProtects campaign which aims to raise awareness of the ways in which the EU combats global challenges to protect its citizens.
This Policy Roundtable, organised by the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU), was hosted by MEPs Deirdre Clune (Ireland, EPP) and Nessa Childers (Ireland, S&D).
The EU legal framework for medicines for human use is intended to ensure a high level of public health protection and to promote the functioning of the internal market, and includes measures that encourage innovation.
The Romanian Foundation for Lysosomal Diseases (FRBL), founded in 1998 in Cluj-Napoca, has marked 20 years since its inception.
Patient-centered research tool to increase knowledge on immune system (dys)function among CDG children and adults - The Immunology and CDG Questionnaire (ImmunoCDGQ) for Patients & Caregivers.
Effective ways of Investing in Health, the Expert Panel will maintain a Hearing on the application of the ERN model in European cross-border healthcare cooperation outside the rare diseases area.