The video from the EU Commission’s DG Health & Food Safety (SANTE) with Endo-ERN Coordinator prof. Alberto Pereira, prof. Franz Schaefer (ERKNET), prof. Marta Mosca (ReCONNECT) & prof. Jean-Yves Blay (EURACAN) is illustrating what the activities and the added value of the European Reference Networks are, particularly from the health professionals’ point of view.

The video is available HERE

In the context of COVID-19 pandemic and launching of the ‘COVID-19 Clinical Management Support System’, DG SANTE is organising a series of webinars to support clinicians and other healthcare professionals at the frontline who treat patients with COVID-19.

The next webinar will be held by Prof. Maurizio Cecconi, President Elect of the European Society of Intensive Care Medicine and Head of Department Anaesthesia and Intensive Care Units, Humanitas Research Hospital, Lombardy in Italy, and by Prof. Jozef Kesecioglu, President of the European Society of Intensive Care Medicine, expert on ethics and intensive care, Head of Intensive Care Centre of the University Medical Centre of Utrecht in The Netherlands. Attendees will then be able to ask questions to the speakers. The webinar will be recorded and available for off line vision afterwards.

To join the webinar, click here

Programme:

The ESE Rare Disease Committee, alongside Endo-ERN, have engaged in an initiative to collect data concerning specific groups of patients with rare endocrine conditions, who are also affected by COVID-19. We believe this is a global unmet need and requires swift, concerted and coordinated action.

The European Registries for Rare Endocrine Conditions (EuRRECa) project, supported by both Endo-ERN and ESE, has developed an e-reporting tool (e-REC) which has been fully operational for over a year within a robust governance and ethical framework and which does not require individual patient consent. The platform is now open to all centres across the world to report a new confirmed or suspected case of COVID-19 in a patient with an existing endocrine or metabolic bone condition.

We would like to encourage you to join us in this important initiative by registering on the e-REC platform and begin submitting data. If you would like to use the e-REC platform to report a new COVID-19 infection in a patient with an existing condition, please visit the e-REC platform and create an account.

If you are already an active user of e-REC, then, after login, you will need to revise your reporting set up.

You can find out more about the functionality of e-REC in this recent report. If you need any assistance, please email the EuRRECa team at info@eurreca.net.

In the context of the current COVID-19 pandemic, the upcoming European Conference on Rare Diseases & Orphan Products (ECRD) will take place ONLINE on 14-15 May.

The ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies.

The ECRD 2020 theme “The rare disease patient journey in 2030” recognises that the next decade holds great potential for improvement and that while we cannot predict the future, we all have a role in preparing for it. See the full ECRD programme built around the six parallel themes.

Register via this link. Deadline for registration is May 1st.