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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Endo-ERN webinar: Understanding Lipodystrophy

On Wednesday July 8th 15:00 – 16:00 CET an Endo-ERN webinar about “Understanding Lipodystrophy” is organised.

The webinar will be held by Prof Giovanni Ceccarini from Azienda Ospedaliera Universitaria Pisana – Obesity Centre, Endocrinology Unit in Italy and Dr. Rebecca Sanders, patient representative of Lipodystrophy UK & representative of European patients inside the Registry Board of ECLip.

Lipodystrophy syndromes are a group of rare (estimated prevalence of 3/1.000.000 if excluding HIV-related forms) and heterogeneous disorders characterized by the complete or partial loss of adipose tissue, in the absence of a nutritional deprivation or a catabolic state.

Lipodystrophy syndromes are usually associated with the development of metabolic syndrome, caused by the abnormal deposition of fat that cannot be stored in appropriate subcutaneous depots. In this event, surplus calories can only be stored as ectopic fat in liver, muscle tissue and other internal organs resulting in insulin resistance, diabetes mellitus, hypertriglyceridemia, and hepatic steatosis or steatohepatitis. Other features include, but are not restricted to, muscle pseudo-hypertrophy, polycystic ovary syndrome, cardiopathies, chronic pain and, overall, in many cases, a marked reduction of the quality of life. Continue reading

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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Endo-ERN webinar: Update on the consensus on congenital hypothyroidism a patient centered approach

On Wednesday July 1st at 17:00 – 18:00 CET an Endo-ERN webinar about “Update on the consensus on congenital hypothyroidism: a patient centered approach” is organised.

The webinar will be held by Prof. Dr. Michel Polak, Paediatric Chair of the MTG ‘Thyroid’ from Hôpital Universitaire Necker – Enfants malades

Webinar summary

WebinarUpdate on the consensus on congenital hypothyroidism a patient centered approach
DateJuly 1st, 2020
SpeakerMichel Polak
RegistrationRegistration is closed
View
MTG

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

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.

Feel free to forward this invitation to any other colleague that might be interested in the topic.

We would like to invite you to the webinar that will take place on:

Tuesday 12 May at 18.00 CET

6th Webinar: ‘COVID-19: Endocrine conditions with increased risk Endo-ERN’

The webinar will be held by Prof. Alberto Pereira, Coordinator of Endo-ERN, from Leiden University Medical Center in the Netherlands, by Prof. Eelco de Koning  from Leiden University Medical Center in the Netherlands and by Prof. Wiebke Arlt from University of Birmingham in the UK.

Attendees will then be able to ask questions to the speakers.

Given the high number of participants, we would like to kindly ask you to consider downloading the app (linked below) or to use computers combined with phone conference systems. Please, if possible avoid using landlines.  Attached you will find a brief explanation on how to access the Webinar. Continue reading

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 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.

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