New Endo-ERN publication: Disease characteristics of MCT8 deficiency: an international, retrospective, multicentre cohort study

The following Endo-ERN manuscript has been accepted for publication, entitled: Disease characteristics of MCT8 deficiency: an international, retrospective, multicentre cohort study (Stefan Groeneweg et al., 2020) also written with collaboration of six members of the Endo-ERN Main Thematic Group Thyroid. The manuscript was published in the July issue of The Lancet Diabetes & Endocrinology.

To view the publication, click here.

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Vacancy: PhD Candidate Endocrinology

Looking for an interesting research opportunity? The Division of Endocrinology of the Department of Medicine at the Leiden University Medical Center (LUMC) has a PhD position available in a dynamic, multidisciplinary clinical research team, in which you will study rare endocrine conditions through real world data collected in registry based European projects, including EuRRECa and EuRR-Bone. Are you the candidate we are looking for?

For more information about this vacancy please click here

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ERN interactive map

The interactive map hosts a searchable interface with details about the ERNs, including multi-lingual factsheets about ERNs and locations of members and affiliated partners.

The data concerned includes ERN names and details, ERN clinical centers names and details (Members, Associated National Centers, Hubs). No personal data are included, functional mailboxes are indicated for the ERNs which provided one. You can look for the information from different points of views: by selecting one or more ERNs, one or more countries, one or more clinical unit. You can also select one or more ERNs, and then restrict to one or more countries, [...]

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Rare diseases: how the European Reference Networks support health professionals

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

 

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Webinar series: COVID-19 and Intensive Care Medicine, 2 June 2020 at 17:00 CET

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 [...]

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Recorded Webinar: COVID-19 & Endocrine conditions with increased risk – Endo-ERN

On May 12th 2020, a successful Endo-ERN webinar about COVID-19 & Endocrine conditions with increased risk was organized. The webinar was chaired by coordinator of Endo-ERN Prof. Alberto Pereira, Prof. Eelco de Koning, both from Leiden University Medical Center in the Netherlands and by Prof. Wiebke Arlt from University of Birmingham in the UK.

The recording of this webinar and presentations are published on the website of the European Commission. View the recording and presentations here.

For an overview of all previously organized & upcoming scheduled Endo-ERN webinars, click here.

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ESE and Endo-ERN launch an initiative to collect data on patients with rare endocrine conditions and COVID-19

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 [...]

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ECRD 2020 Online 14-15 May

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

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