The European Joint Programme on Rare Diseases brings over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.
European Joint Programme on Rare Diseases (EJP RD) Read More »
Comprehensive coverage of ERN Coordinators meeting and Board of Member States discussions on network expansion and system integration.
ERN Coordinators and Board of Members States News Read More »
On January 14th, 2019, a Clinical Patient Management System meeting is took place at the University Medical Center Groningen (UMCG) in Groningen, The Netherlands.
Clinical Patient Management System Meeting Report Read More »
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 »
A qualitative analysis examining mutual learning outcomes between patients and researchers in rare disease research collaboration.
A collaborative research initiative within MetabERN’s AOA subnetwork investigating ultra-rare disorders of sulfur metabolism.
Collaboration on Ultra-Rare Disorders of Sulfur Metabolism Read More »
The EUProtects campaign showcases how European Reference Networks demonstrate EU collaboration in healthcare protection.
EUProtects Campaign Read More »
Analysis of European Union legislation governing the development and authorization of medicines for rare and pediatric diseases.
Evaluation of the legislation on medicines for children and rare diseases Read More »
A collaborative research questionnaire developed to advance understanding of immune system function in CDG patients and caregivers.
Patient Centred Research Tool Read More »
Analysis of MetabERN’s 2018 healthcare provider survey on training needs and educational approaches for rare metabolic diseases.
Questionnaires about training and education in HCPs of MetabERN Read More »
An intensive course providing neonatologists with essential skills for diagnosing and treating inherited metabolic disorders in newborns.
The July 2019 European Gaucher Disease congress in Clermont-Ferrand united experts to address challenges for the years 2020-2025.
13th EWGGD: Gaucher disease: 2020-2025 challenges Read More »
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