EJP RD – Second Research Training Workshop call is now open

EJP RD – Second Research Training Workshop call is now open

The call is open from the 31st August until 28th of September 2020

The goal of the workshops is to train researchers and clinicians affiliated to ERN-Full Members or – Affiliated Partners in relevant topics on rare diseases research. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be aiming to provide a cross-ERN added value.

The workshops will be delivered as two-day events. Topics can be proposed by clinicians/investigators affiliated to ERN-institutions or EJP RD beneficiaries. As of 2021, there will be two deadlines for workshop topic applications per year, in January and June.
Topics will be selected taking into consideration several elements such as:

• Addressing cross-cutting issues relevant for ERNs
• Multidisciplinary topics
• Fostering collaboration (within and between ERNs)
• No overlap with other EJP RD training activities
• Relevance of the topic for the ERN(s)
• Benefits for the RD community
• Appropriate training methodology

The workshops selected for funding will be attended only by individuals affiliated to ERN institutions. Participants will be selected by the coordinator of the ERN managing institution and the workshop organizer based on pre-defined criteria. The costs for the workshop organization will be covered up to a limit of € 25000,00. These include the costs and fees typically charged by the event venue, administrative, audio-visual and IT facilities essential for the workshop, catering, travel and accommodation expenses of workshops participants and invited speakers (if envisaged).

The second call for Research Mobility Fellowships will open October 1st, 2020.

For more information, visit the website

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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, or one or more clinical unit(s). The information will be displayed as pins on the map and as a list of results at the bottom of the map: by clicking on each result, you will see the details.

To access the map please click here.

 

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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 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:

Agenda:
17.00 – 17.05 

 

17.05 – 17.25

 

 

 

 

17.25 – 17.45

 

 

 

 

17.45 – 18.00

  • Welcome DG SANTE, European Commission

 

 

  • Surge ICU response and clinical aspects and management 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, Italy

 

  • Ethics and family involvement during a pandemic.

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, Netherlands

 

  • Q&A

 

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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 ProfWiebke 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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