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COVID-19 Pandemic
During this time with the pandemic of COVID-19, Endo-ERN remains committed to its aims to provide the best possible support to patients with rare endocrine diseases and their families.
Therefore, Endo-ERN has created a webpage with the latest relevant information regarding COVID-19. This section has been created as a hub for patients with rare endocrine conditions who need information, and clinicians treating COVID-19 patients with rare endocrine conditions.
This section will continuously be updated with the most relevant information that is provided throughout Europe (and beyond) about COVID-19, in association with rare endocrine diseases. This comprises information for patients about preventive measures, guidelines, initiatives from healthcare professionals, experts, health authorities, and patient associations from different countries and in different languages.
If you have any suggestion for new information, please send us an email with the details.
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European webpage on ERNs and COVID-19
In the context of the fight against the coronavirus pandemic, the European Commission published a European webpage on the ERNs and COVID-19. This page provides a description of the COVID-19 CMSS (see below), the statement by the ERN Board of Member states and the eNews. This page will become available in all EU languages shortly.
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COVID19 Clinical Management Support System
On 24 March, the European Commission launched the “COVID-19 Clinical Management Support System” with the aim to support clinicians in hospitals that are currently facing the COVID-19 emergency all over Europe. This initiative supports the clinicians and healthcare providers dealing with the care of COVID-19 infected patients, that allows sharing clinical knowledge and expertise among peers.
Any healthcare professional involved in complex COVID-19 cases can access the Web Conferencing system and get the support of a dedicated Helpdesk by registering through this link: where you will find a detailed description of the system and a privacy statement in compliance with the GDPR.
This support system is not just for ERN experts, but for all EU hospitals and clinicians treating complex COVID19 cases.
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Extension deadline second call
The European Commission has informed all ERNs that the deadline for the second call applications will be extended due to Covid-19. The European Commission will inform all ERNs as soon as the formal procedure is completed and the new deadlines are formally established.
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Endo-ERN General Assembly
On Tuesday 10 March 2020, due to the necessary cancellation of the face-to-face meeting of the Endo-ERN General Assembly (GA) in Verbania, the standing office in Leiden organized a web-based GA as a concise alternative.
The meeting consisted of a morning-and an afternoon session. Prior to the Ga, the Steering Committee & Advisory board meeting was held.
The web-based GA was attended by 111 participants! This exemplifies that web-baed meetings can be a successful alternative. However, face-to-face meetings remain important.
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Endo-ERN webinar: Update on congenital adrenal hyperplasia
On Monday March 23rd an Endo-ERN webinar entitled “Update on congenital adrenal hyperplasia” was organised. The webinar was held by Prof. Dr. med. Nicole Reisch, Ludwig-Maximilian-University Munich, Germany. Chair of the Adrenal MTG1. In total 36 participants attended the webinar.
The webinar was recorded and will be published soon, this enables you to follow the webinar whenever it suits you!
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New ePAG MTG5 Growth & Obesity Syndromes
Our most recent Endo-ERN ePAG representative Nathalie Ferard, has recently joined Main Thematic Group 5: Growth & Genetic Obesity Syndromes, representing her organization Association Grandir.
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Endo-ERN webinar: Prophylactic thyroidectomy in Children with MEN2
On Friday, 21 February 2020, an Endo-ERN webinar about “Prophylactic thyroidectomy in Children with MEN2” was organised.
Prophylactic thyroidectomy in children diagnosed with MEN2 is a recommended treatment and in this webinar Prof. Tom Kurzawinski presented the most recent data on the optimal timing surgery as well as its outcomes.
Interested in learning more about this subject? The webinar was recorded and can be viewed here
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CPMS update
On March 2, Daniëlle Steenvoorden and Isabel Mönig, members of the CPMS helpdesk, organised a webinar about the Clinical Patient Management System, specifically for our Affiliated partners. They provided an overview on how to register via SAAS, explained the use of Endo-ERN Dashboard as well as the Patient Information Form and also explained how to enroll a patient.
If you have any questions regarding CPMS, please email the CPMS helpdesk. CPMSHelpdesk@Endo.ern.net.eu
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Endo-ERN webinar: Alström Syndrome
On Thursday, 13 February, the fourth Endo-ERN webinar was organized under the umbrella of MTG 7 by Prof. Claus Gravholt, MD, PhD, Aarhus University Hospital Denmark and Arlene Smyth, mother of a patient, Executive Officer of the Turner Syndrome Support Society and Endo-ERN patient representative.
Prof. Gravholt focussed on the medical health issues and the neurocognitive challenges that many women with TS face during adulthood. In addition, he talked about the need for centralized care in all countries, as well as the urgently needed interdisciplinarity. Lastly, Arlene Smyth shared the patient perspective.
The webinar was also recorded and can be viewed here.
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Report of feasibility study on EURaDMoG
Feasibility study published on the opportunity of setting-up a European Expert Network for rare communicable diseases and other rare pathologies in the context of mobility and globalisation (EURaDMoG).
The study, funded by the EU, was produced under the EU Third Health Programme (2014-2020) and is exploring the options to set up a European expert network on rare diseases in the context of mobility and globalisation, with the purpose of improving healthcare provision. The study takes into account different operational, funding and sustainability criteria.
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