EJP RD – Expression of interest to participate in the first online paediatric expert patients training workshop
Young rare disease patients (12-18) can apply for an EJP RD training on research and advocacy. Applications close on 30 October 2021.
News for Patients
New study in patients with Smith-Lemli-Opitz syndrome
A study published in Biomolecules explores the biochemical and clinical effects of Vitamin E in Hungarian SLOS patients.
New study in patients with Smith-Lemli-Opitz syndrome Read More »
EMERGENCY PROTOCOLS FOR PATIENTS WITH FAOD OR GSD | 22 JUNE 2021
An emergency letter and knowing how to use it can prevent life-threatening situations and will optimize communications between parents and doctors.
EMERGENCY PROTOCOLS FOR PATIENTS WITH FAOD OR GSD | 22 JUNE 2021 Read More »
10 Principles for Greater Patient Empowerment
Weber Shandwick, in collaboration with EU patient groups, trade associations and policy-makers has produced a set of 10 principles and actions.
10 Principles for Greater Patient Empowerment Read More »
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 »
“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.
