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.
News
Collaboration on Ultra-Rare Disorders of Sulfur Metabolism
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 »
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.
Evaluation of the legislation on medicines for children and rare diseases 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 »
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.
Questionnaires about training and education in HCPs of MetabERN Read More »
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.
The 26th edition of the Summer School on Pediatrics Read More »
International Cystinosis Conference 2020
Cystinosis Ireland planned to host the international conference in Dublin, July 2020, to advance research and patient support.
International Cystinosis Conference 2020 Read More »
PhD positions for the Marie-Curie Innovative Training Network
European training network offering interdisciplinary PhD positions in Systems Medicine research for inherited metabolic disorders.
PhD positions for the Marie-Curie Innovative Training Network Read More »
Polymers in the Liver: Metabolism and Regulation
Polimer consortium aims to set a landmark in the present European Higher Education Area as the first research training initiative in personalised ‘Systems Medicine’.
Polymers in the Liver: Metabolism and Regulation Read More »
