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 »
News
Technical Assessment and Audit by Andalusian Agency for Healthcare Quality (ACSA)
The 2018 technical assessment and audit process for selected European Reference Network members by the Andalusian quality agency.
Technical Assessment and Audit by Andalusian Agency for Healthcare Quality (ACSA) Read More »
Health policies in the future EU budget (2021-2027)
The EU’s 2021-2027 budget includes €413M for health policies under ESF+. Other funding sources will also support public health.
Health policies in the future EU budget (2021-2027) Read More »
Plaza in ERN Collaborative Platform (ECP)
Plaza, a new forum on the ERN Collaborative Platform, allows ERN members to connect, share updates, and collaborate.
Plaza in ERN Collaborative Platform (ECP) Read More »
EMA and ERN Collaboration: How European Reference Networks can add value to clinical research
On 29-30 May 2018, EMA and ERNs discussed how to collaborate to improve clinical research on rare and complex diseases.
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.
Position statement from the European Reference Networks (ERNs) Network Coordinators
Historical position statement from 24 ERN coordinators emphasizing the crucial need for European collaboration in rare disease treatment.
Position statement from the European Reference Networks (ERNs) Network Coordinators Read More »
