EURORDIS member webinars on European Reference Networks (ERNs)

EURORDIS is holding a series of webinars to discuss the development of ERNs and how EURORDIS member organisations can get involved in the first call for ERNs.

6th member webinar - Virtual healthcare and data sharing in an ERN

14 November 2016, 14:00 GMT+1

The webinar Data Sharing for Virtual Care within ERNs is a follow-up on the RD Action workshop 'Data Sharing for Virtual Care' within ERNs dedicated to sharing data for virtual care within the ERN framework with the aim to discuss guidance and good practices for ERNs to collect and share data for care within ERNs.​

5th member webinar - Capacity building for national alliances on ERNs

24 October 2016, 14:00 GMT+1

This webinar was held specifically for rare disease national alliances in the framework of implementing concrete measures for better access to care for rare disease patients at national level and the links between specialised units, centres of expertise and future ERNs.

The objective of the webinar was to give guidance on the issues around ERNs that need to be addressed at national level, to ensure a sound understanding of what is at stake in each country and to provide you with the necessary tools to prepare your advocacy at national level.

4th member webinar - Hands-on guidance for the first call for ERNs

29 March 2016, 16:00 – 17:30 GMT+1

In this webinar, the fourth in a series of EURORDIS ERN member webinars, EURORDIS Chief Executive Officer Yann Le Cam and Health & Research Director Matt Johnson gave hands-on guidance on how to develop an ERN application to respond to the first call, which launched on 16 March.

They also explained the European Patient Advocacy Groups (ePAGs) and how these groups will help to ensure patient-centric ERNs. These ePAGs will bring together elected patient representatives who will ensure that the patient voice is heard throughout the ERN development process. Their presentations were followed by a Q&A.

3rd member webinar - What is an ideal ERN? February 2016

The third in a series of member webinars on ERNs, this webinar focused on defining an ideal ERN from the rare disease patient perspective. This webinar offered the opportunity for EURORDIS members to brainstorm ideas on a vision of an ideal European Reference Network and services these networks will provide. Hosted by Matt Johnson, EURORDIS Healthcare Research Director .

2nd member webinar on ERNs, October 2015

The second member webinar took place shortly after the second European Commission Conference on ERNs. Yann Le Cam, EURORDIS Chief Executive Officer, and Matt Johnson, Healthcare and Research Director, discussed new information made available at the conference regarding the upcoming call for ERNs. Their presentation was followed by a live Q&A during which participants asked questions.




1st member webinar on ERNs, July 2015

The first EURORDIS member webinar on ERNs took place following discussions on the topic at the EURORDIS Membership Meeting 2015.



European Reference Networks (ERNs) at EURORDIS events

ERNs have been the focus of discussion at many EURORDIS events.

eurordis-membership-meeting2015 EURORDIS Membership Meeting

Discussions at the 2015 EURORDIS Membership Meeting focused on ERNs. See presentations here and the eNews article here.




cna-and-cef2015 EURORDIS Council of National Alliances & Council of European Federations Meeting

This meeting included training on the upcoming call for European Reference Networks.




ecrdECRD 2016: The European Conference on Rare Diseases & Orphan Products

Stay tuned for more material on ERNs from discussion at the upcoming European Conference on Rare Diseases & Orphan Product 2016, taking place 26 – 28 May 2016 in Edinburgh.






Page created: 12/11/2015
Page last updated: 24/04/2018
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases