ERN newsletter update

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29 April 2020

ERNs and Covid-19

DG SANTE’s commitment to tackling Covid-19

The ERN Board of Member States supports the Commission’s Covid-19 Communication Support System

How are ERNs supporting their patients affected by rare diseases during the COVID-19 pandemic?

Interviews with key players

Interview with Inês Alves, patient representative in ERN BOND

Interview with Inés Hernando, ERN & Healthcare Director, EURORDIS-Rare Diseases Europe

News from the ERN community

Examination of membership applications for existing ERNs suspended from 1 April 2020 to 31 August 2020

Call for tender for the provision of an integrated Assessment, Monitoring, Evaluation and Quality Improvement System (AMEQUIS) for the European Reference Networks:

Commission launches “COVID-19 Clinical Management Support System”

Call for tender to promote short term mobility and exchanges of healthcare professionals working in the ERNs

Capacity building of the European Reference Networks to develop and adapt clinical decision-making tools addressing rare diseases: the ERN-Clinical Guidelines Programme

Good practices and inspirational stories

Orphanet & ERNs: working together to produce, improve and share knowledge on rare diseases

The European Joint Programme on Rare Diseases, an opportunity for the ERNs to leverage on research

Study conducted by the European Brain Council on the value of early coordinated care for patients affected by rare neurological diseases

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

ERN-EYE educational video for healthcare professionals: how to welcome visually impaired people to the hospital?

ERN-RND educational webinars in collaboration with ERN EURO-NMD and the European Academy of Neurology

First Italian cross-ERN meeting: an initiative to strengthen coordination and help better integrate the ERNs into the Italian health system

Citizen Science 2.0: Patient science for research into rare diseases, the experience of ERN-LUNG

A patient journey for an esophageal atresia patient: the proposal of ERNICA

ERN RARE-LIVER starts quality of life project

First clinical guideline on craniofacial microsomia developed by ERN CRANIO

Rare Disease Day 2020: the experience of ITHACA

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The content of the section "Good practices and inspirational stories" does not reflect the official opinion of the European Union. Responsibility for the information and views expressed here lies entirely with the author(s).