Today, the first EU patients can use ePrescriptions issued by their home doctor when visiting a pharmacy in another EU country.
Today, the first EU patients can use ePrescriptions issued by their home doctor when visiting a pharmacy in another EU country.
Abstract Background There is increasing interest in actively involving patients in the process of medical research to help ensure research is relevant and important to both researchers and people affected by the disease under study. This project examined the recently formed Vasculitis Patient-Powered Research Network (VPPRN), a rare disease research network, to better understand what […]
Call for collaboration on ultra-rare disorders of sulfur metabolism
The European Reference Networks are featured in the Commission's EUProtects campaign which aims to raise awareness of the ways in which the EU combats global challenges to protect its citizens.
The European Commission (DG SANTE) has commissioned a study to support the evaluation of the EU Orphan Regulation. This study focuses on the relevance, efficiency, effectiveness, coherence and EU added value of the regulation.
The EU legal framework for medicines for human use is intended to ensure a high level of public health protection and to promote the functioning of the internal market, and includes measures that encourage innovation.
Patient-centered research tool to increase knowledge on immune system (dys)function among CDG children and adults - The Immunology and CDG Questionnaire (ImmunoCDGQ) for Patients & Caregivers.
This report gives an overview of the results of the Survey that has been sent out to MetabERN members in January 2018. The two questionnaires are dedicated to: – training, – Internship, – Opinion concerning organization of training in the field of rare metabolic diseases Attached documents
Early diagnosis and management of newborns and infants with inherited metabolic disorders is essential for the affected children’s outcome. However, the quick and correct recognition of specific inherited metabolic disease in neonates is a challenge for neonatologists. It may be difficult, especially in critically ill neonates, to distinguish between the primary genetically encoded metabolic disorder […]
Dear Friends, Dear Colleagues, Dear Patients, We are delighted to invite you to the 13th European Working Group on Gaucher Disease Congress (EWGGD 2019, www.ewggd.org) to be held from 4-6 July, 2019 in Clermont-Ferrand, Auvergne, France. The EWGGD congress is unique in several ways: It is the only international congress dedicated to Gaucher disease in […]