DG SANTE’s commitment to tackling Covid-19 (28/04/2020)
The ERN Board of Member States supports the Commission’s Covid-19 Communication Support System (28/04/2020)
How are ERNs supporting their patients affected by rare diseases during the COVID-19 pandemic? (28/04/2020)
Interview with Inês Alves, patient representative in ERN BOND (28/04/2020)
Interview with Inés Hernando, ERN & Healthcare Director, EURORDIS-Rare Diseases Europe (28/04/2020)
Examination of membership applications for existing ERNs suspended from 1 April 2020 to 31 August 2020 (28/04/2020)
Call for tender for the provision of an integrated Assessment, Monitoring, Evaluation and Quality Improvement System (AMEQUIS) for the European Reference Networks: (28/04/2020)
Commission launches “COVID-19 Clinical Management Support System” (28/04/2020)
Call for tender to promote short term mobility and exchanges of healthcare professionals working in the ERNs (28/04/2020)
Capacity building of the European Reference Networks to develop and adapt clinical decision-making tools addressing rare diseases: the ERN-Clinical Guidelines Programme (28/04/2020)
Orphanet & ERNs: working together to produce, improve and share knowledge on rare diseases (28/04/2020)
The European Joint Programme on Rare Diseases, an opportunity for the ERNs to leverage on research (28/04/2020)
Study conducted by the European Brain Council on the value of early coordinated care for patients affected by rare neurological diseases (28/04/2020)
ERN eUROGEN: how we use the Clinical Patient Management System (CPMS) to treat a newborn baby with a rare and complex condition requiring multidisciplinary care (28/04/2020)
ERN-EYE educational video for healthcare professionals: how to welcome visually impaired people to the hospital? (28/04/2020)
ERN-RND educational webinars in collaboration with ERN EURO-NMD and the European Academy of Neurology (28/04/2020)
First Italian cross-ERN meeting: an initiative to strengthen coordination and help better integrate the ERNs into the Italian health system (28/04/2020)
Citizen Science 2.0: Patient science for research into rare diseases, the experience of ERN-LUNG (28/04/2020)
A patient journey for an esophageal atresia patient: the proposal of ERNICA (28/04/2020)
ERN RARE-LIVER starts quality of life project (28/04/2020)
First clinical guideline on craniofacial microsomia developed by ERN CRANIO (28/04/2020)
Rare Disease Day 2020: the experience of ITHACA (28/04/2020)
Interview with Dr Lennart Christiansson, MD, PhD - co-Chair of the ERN Board of Member States (05/12/2019)
Interview with Prof. Dr. Irene M.J. Mathijssen, MBA-Health - Chair of the 24 coordinators (05/12/2019)
ERNs in a crucial phase of enlargement (05/12/2019)
Intense and deep discussions at the ERNs Coordinators’ meeting in November (05/12/2019)
ERNs' geographical enlargement and scope boundaries at the centre of the Member States' discussion in November (05/12/2019)
EU protects campaign: Silver award for ERNs video at Cannes Corporate Film Awards (05/12/2019)
Adoption of the ORPHA codes by ERN-Rare Liver for a more detailed patient classification and targeted financial support (05/12/2019)
Successful collaboration between the ERN-EuroBloodNet and the French National Contact Point to ensure continuity of care of an Erasmus student affected by a rare disease (05/12/2019)
How our small baby was helped by MetabERN experts (05/12/2019)
"Emergency cards" proposed by ERN-Skin to help optimise patients' care in situations of emergency (05/12/2019)
First Italian joint meeting of Endo ERN, ERKNet and Bond ERN (05/12/2019)
ERN-EYE featured by France Télévisions in a reportage in the framework of the “EU Protects” campaign (05/12/2019)
Strategy of eUROGEN to integrate its Affiliated Partners (05/12/2019)
ERN TransplantChild launches a video to call for paediatric ERNs Crosstalk (05/12/2019)
VASCERN’s Patient pathways (05/12/2019)
ERN-EuroBloodNet: the establishment of a European Network of Sickle Cell Disease Patients Organisations (05/12/2019)
Two statements adopted on ERNs integration into the national health systems and cooperation with industry (03/07/2019)
Interview with Andrzej Rys, European Commission – DG SANTE (03/07/2019)
Interview with Eve Parier, Hospital manager of St Louis, Lariboisière, Fernand Widal – France (03/07/2019)
ERN hospital managers committed to strengthen collaboration to support the implementation of the ERNs (03/07/2019)
Support for the setting-up of registries of patients affected by rare diseases available for all the ERNs (03/07/2019)
How the ERNs are embedded in national rare disease policy: the French experience (03/07/2019)
The Hungarian National Plan: improving the care of people living with rare diseases (03/07/2019)
How to customise the CPMS to specific ERN needs: the example of ERN-EYE (03/07/2019)
Solving the unsolved rare diseases: the Solve-RD project (03/07/2019)
Electronic reporting tool to support monitoring activity of the ERNs: the case of “e-REC” implemented by Endo-ERN (03/07/2019)
Clinical Practice Guidelines for rare diseases, how to gather and adapt existing (rare) expertise to improve effectiveness and quality of care: the experience of ERN ReCONNET (03/07/2019)
Information to patients and health professionals: VASCERN’s Do’s and Don’ts Factsheets for rare vascular disease patients (03/07/2019)
A “CPMS newsletter” to keep healthcare professionals informed about the latest developments: an initiative of eUROGEN (03/07/2019)
Education and training for patients and health professionals: the experience of ERKNet (03/07/2019)
An online expert advice service for patients affected by respiratory rare diseases: the EXABO initiative set up by ERN-LUNG (03/07/2019)
Training healthcare professionals: the webinars organised by EURO-NMD (03/07/2019)
“Patient journeys” to help patients share their experience with their diseases: the experience of ERN GENTURIS (03/07/2019)
Improving the transition from paediatric to adult healthcare: a project carried out by MetabERN (03/07/2019)
Mapping of activity and expertise to support work in the field of rare diseases: the case of Transplantchild (03/07/2019)
