Emergency situations are a major burden for many IEM-patients and their families. Having an emergency letter and knowing how to use it can prevent life-threatening situations and will optimize communications between parents and doctors.
Patient Journeys “I will not be ashamed to say ‘I don’t know’, nor will I fail to call in my colleagues…” But what if there are no other healthcare...
The goal of this meeting was to encourage adult MPS patients to be independent – Stand on their Own.
Today, the first EU patients can use ePrescriptions issued by their home doctor when visiting a pharmacy in another EU country.
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.
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.
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.
RD-Connect is an EU-funded integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research. Together with the ERN EURO-NMD, RD-Connect is organising a series of webinars aiming to train ERN members at all levels. The webinars will let you learn how the RD-Connect tools can help you in your everyday work.
Informative materials, where you will find out what we've achieved in the first year, what the plans are for the second year, and to gather some information about the ERN and MetabERN?
Prof Maurizio Scarpa (MetabERN Coordinator), Francjan van Spronsen, MetabERN Representative from Rijksuniversiteit Groningen (NL), and Lut de Baere responsible for the MetabERN Patients organisations management, have recently participated in the policy Round Table on Phenylketonuria (PKU)