ERN Coordinators and Board of Members States News
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 »
News
Clinical Patient Management System Meeting Report
On January 14th, 2019, a Clinical Patient Management System meeting is took place at the University Medical Center Groningen (UMCG) in Groningen, The Netherlands.
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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.
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Patient involvement in medical research: what patients and physicians learn from each other
A qualitative analysis examining mutual learning outcomes between patients and researchers in rare disease research collaboration.
Collaboration on Ultra-Rare Disorders of Sulfur Metabolism
A collaborative research initiative within MetabERN’s AOA subnetwork investigating ultra-rare disorders of sulfur metabolism.
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EUProtects Campaign
The EUProtects campaign showcases how European Reference Networks demonstrate EU collaboration in healthcare protection.
EUProtects Campaign Read More »
Evaluation of the legislation on medicines for children and rare diseases
Analysis of European Union legislation governing the development and authorization of medicines for rare and pediatric diseases.
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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 »
Questionnaires about training and education in HCPs of MetabERN
Analysis of MetabERN’s 2018 healthcare provider survey on training needs and educational approaches for rare metabolic diseases.
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Inborn errors of metabolism in neonatology: clues for successful diagnosis and treatment
An intensive course providing neonatologists with essential skills for diagnosing and treating inherited metabolic disorders in newborns.
13th EWGGD: Gaucher disease: 2020-2025 challenges
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 »
The 26th edition of the Summer School on Pediatrics
The 2019 University Medical Center Groningen summer program offered international students advanced training in pediatric medicine.
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