Read the online version

03 July 2019

Interviews with key players

Interview with Andrzej Rys, European Commission – DG SANTE

Interview with Eve Parier, Hospital manager of St Louis, Lariboisière, Fernand Widal – France

News from the ERN community

Two statements adopted on ERNs integration into the national health systems and cooperation with industry

ERN hospital managers committed to strengthen collaboration to support the implementation of the ERNs

Support for the setting-up of registries of patients affected by rare diseases available for all the ERNs

Good practices and inspirational stories

How the ERNs are embedded in national rare disease policy: the French experience

The Hungarian National Plan: improving the care of people living with rare diseases

How to customise the CPMS to specific ERN needs: the example of ERN-EYE

Solving the unsolved rare diseases: the Solve-RD project

Electronic reporting tool to support monitoring activity of the ERNs: the case of “e-REC” implemented by Endo-ERN

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

Information to patients and health professionals: VASCERN’s Do’s and Don’ts Factsheets for rare vascular disease patients

A “CPMS newsletter” to keep healthcare professionals informed about the latest developments: an initiative of eUROGEN

Education and training for patients and health professionals: the experience of ERKNet

An online expert advice service for patients affected by respiratory rare diseases: the EXABO initiative set up by ERN-LUNG

Training healthcare professionals: the webinars organised by EURO-NMD

“Patient journeys” to help patients share their experience with their diseases: the experience of ERN GENTURIS

Improving the transition from paediatric to adult healthcare: a project carried out by MetabERN

Mapping of activity and expertise to support work in the field of rare diseases: the case of Transplantchild

This is a newsletter of DG Health and Food Safety. For more information, please visit our European Reference Networks website.

The European Commission is committed to personal data protection. Any personal data is processed in line with Regulation (EU) 2018/1725.

All personal information processed by the Directorate-General for Health and Food Safety is treated accordingly.

Visit Your Profile to subscribe, unsubscribe or change your options.

To unsubscribe via email, please send a message with subject "Unsubscribe ERN Newsletter" to sante-webmaster@ec.europa.eu.

For Editorial content, please contact SANTE-ERN@ec.europa.eu.

For technical problems, please contact sante-webmaster@ec.europa.eu.

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).