Endo-ERN Newsletter April 2020 ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏
Newsletter April 2020
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Continously updated Endo-ERN COVID-19 webpage

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 dedicated webpage on the Endo-ERN website in March 2020, 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.

In the meantime, many European initiatives & country specific initiatives have been collected and published at our web-page. Currently, initiatives from 12 different EU countries are published. View all country specific initiatives here.

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. Therefore, we would like to encourage all our members and associates to join us in this important initiative by registering on the e-REC platform and begin submitting data.

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

On Tuesday 12 May at 18.00 CET, the webinar will be chaired by Prof. Alberto Pereira, Coordinator of Endo-ERN and by 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.

For more information about the program, click here.

Work Package 3 Survey: Patients view on the unmet need in endocrine medical research

In close collaboration with our ePAG representative Johan de Graaf from the Dutch Pituitary Patient Organization, a Pan-European patient survey was developed in 22 languages regarding the Patients view on the unmet need in endocrine medical research. The survey was distributed via patient advocacy groups, reference centres of Endo-ERN and the Orphanet newsletter. The results from this survey are presented by Johan de Graaf, via his ECRD 2020 poster within the overarching theme number 4: When therapies meet the needs: enabling a patient-centric approach to therapeutic development.

ECRD 14-15 May online

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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 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.

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New Endo-ERN manuscript accepted for publication in European Journal of Endocrinology

We are proud to announce that the manuscript coordinated by Work Package 5 “Diagnostics & laboratory analysis” in collaboration with EU COST action, entitled “Peptide Hormone Analysis in Diagnosis and Treatment of Differences of Sex Development: Joint Position Paper of EU COST Action “DSDnet” and European Reference Network on Rare Endocrine Conditions” has been accepted for publication in the European Journal of Endocrinology.

To view the publication, click here.

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Personal CPMS video coaching

The CPMS help desk introduces a personal video coaching for every Endo-ERN member. During this video coaching, the help-desk can answer all your questions and guide you and your colleagues personally trough the different steps of creating a panel and other features of CPMS.

The number of panels is one of the indicators of the continuous monitoring of the ERNs. Therefore Endo-ERN and the CPMS help-desk acknowledge that it is very important to encourage all Endo-ERN members to ask for guidance when needed.

If you are interested to get this support please send an email to the CPMS help-desk, in order to schedule an online meeting with you and the other experts of your expert centre, adjusted to your individual wishes and needs.

CPMS Newsletter

The new CPMS newsletter will soon be published. The newsletter can be found here.

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ERN newsletter

On April 29 2020, the ERN newsletter of April has been published by European Commission. Read more about ERNs and COVID-19, interviews with key players and more news from the ERN community.

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