Generic Emergency Protocol
MetabERN launches an online emergency protocol generator for patients with fatty acid oxidation and glycogen storage disorders.
Generic Emergency Protocol Read More »
News for Patients
“Patient Journeys”: improving care by patient involvement
New initiative explores patient experiences in rare disease care to improve healthcare services and clinical guidelines development.
“Patient Journeys”: improving care by patient involvement Read More »
First EU citizens using ePrescriptions in other EU country
Today, the first EU patients can use ePrescriptions issued by their home doctor when visiting a pharmacy in another EU country.
First EU citizens using ePrescriptions in other EU country Read More »
EUProtects Campaign
The EUProtects campaign showcases how European Reference Networks demonstrate EU collaboration in healthcare protection.
EUProtects Campaign Read More »
Patient Centred Research Tool
A collaborative research questionnaire developed to advance understanding of immune system function in CDG patients and caregivers.
Patient Centred Research Tool Read More »
Informative Materials, what we’ve been up to.
A comprehensive collection of documents showcasing MetabERN’s achievements, future plans and educational materials.
Informative Materials, what we’ve been up to. Read More »
NORD Launches RareInsights – 5 Myths About Orphan Drugs
An insightful analysis of five common myths about orphan drugs and their real impact on healthcare systems and rare disease treatment.
NORD Launches RareInsights – 5 Myths About Orphan Drugs Read More »
Launch of a new public-private partnership to improve clinical trial infrastructure to facilitate the development of new drugs for children in Europe
The members of the “conect4children” (c4c) initiative today announced the start of a large collaborative paediatric network that will facilitate the development of new drugs and other therapies for the entire paediatric population in Europe.
Chafea organised kick-off meeting for five new rare diseases’ registries
Chafea organised a kick-off meeting for five new rare diseases’ registries in Luxembourg on the 17th of April 2018, which involved 40 participants.
Chafea organised kick-off meeting for five new rare diseases’ registries Read More »
RARE DISEASE NETWORKS, ONE YEAR IN
Health Commissioner Andriukaitis evaluates the first year of ERN operations and outlines key challenges for rare disease networks.
RARE DISEASE NETWORKS, ONE YEAR IN Read More »
ERNDIM’s plea for samples of Inborn Errors of Metabolism patients
A critical request for blood and urine samples from metabolic disorder patients to maintain high quality diagnostic laboratory standards.
ERNDIM’s plea for samples of Inborn Errors of Metabolism patients Read More »
European Reference Networks (ERNs) Accelerating and Improving Diagnosis for Rare Disease Patients
In February 2018, a European Parliamentary Meeting gathered healthcare leaders to improve diagnostic timelines for rare diseases.
