Endo-ERN Newsletter May 2020 ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏
Revised: Endo-ERN Newsletter May 2020

Endo-ERN Covid-19-webpage

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Endo-ERN has created a page dedicated to Covid-19, especially for patients with rare endocrine conditions who need information, and clinicians treating COVID-19 patients with rare endocrine conditions.

This page is continuously updated with the most relevant information from EU countries and European initiatives. Already 12 countries provided relevant information. Interested? Click here!

Endo-ERN Webinar: Covid-19 & Endocrine conditions with increased risk

Covid webinar

On May 12th 2020, a successful Endo-ERN webinar about COVID-19 & Endocrine conditions with increased risk was organized. The webinar was chaired by Endo-ERN coordinator 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.

New webinars of the COVID-19 Clinical Management Support System

In the week of 8 June 2020, two new webinars will be organized by DG Sante, European Commission. The first webinar is on Monday 8 June 2020, at 17:00-18:00 PM CET about "Covid-19 and the Kidney" in collaboration with ERKnet. The link and agenda of the webinar are available on the website of the European Commission

The second webinar is on Tuesday 9 June 2020 at 11:00 PM - 12:00 CET, about "The impact of COVID19 for people living with a Rare Disease" in collaboration with EURORDIS. The link of the webinar and agenda are available on the website of the European Commission.

Two novel Endo-ERN publications

Two novel Endo-ERN manuscripts have been accepted for publication. The first manuscript is published in the European Journal of Endocrinology on May 15th 2020. The publication, entitled; An overview of clinical activities in Endo-ERN: the need for alignment of future network criteria is written on behalf of the Endo-ERN Main Thematic Groups Pituitary (6) and Thyroid (8). View the publication here.

The second publication, entitled: Genetic testing in inherited endocrine disorders, Joint position paper of the European Reference Network on Rare Endocrine Diseases (Endo-ERN) will be published in the Orphanet Journal of Rare Diseases.

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

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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.

ECRD 2020

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The 10th edition of the European Conference on Rare Diseases & Orphan Products was a great success! A record of 1500 participants from 57 different countries participated and 100+ expert speakers hosted sessions on the 6 conference themes.

Endo-ERN coordinator Prof. Alberto Pereira was one of the theme leaders of theme 3: Share, Care, Cure, transforming care for rare diseases in 2030.

In addition, Prof. Alberto Pereira attended three sessions within theme 3;

As panelist at the panel discussion during Session 301: “Live longer, healthier lives”: Rare Disease Population Needs 2030 (and beyond), as key note speaker during session 302: ERN & CoE Accreditation as Quality Improvement Framework and as session chair during session 0303: Clinic of the Future & Digital Care Pathways.

Our WP2 chair (E-Health & ICT) & EuRRECa coordinator Faisal Ahmed was one of the speakers of the session “Bringing real life into therapeutic development” within Theme 4 When therapies meet the needs: enabling a patient-centric approach to therapeutic development.

And our ePAG representative Johan de Graaf from the Dutch Pituitary Patient Organization, co-developed within WP3 (Research & Science) a Pan-European patient survey in 22 languages regarding the Patients view on the unmet need in endocrine medical research. Results of this survey were presented via his ECRD poster, number 144.

In case you missed a session you were interested in, it is now possible to access all recordings of the sessions.

Recording Endo-ERN webinar MTG1: Update on congenital adrenal hyperplasia

The recording of MTG1 webinar by Nicole Reisch from Ludwig-Maximilian-University Munich Germany about 'Update on congenital adrenal hyperplasia', on March 23 2020 is now available to watch. The recording is available here.

CPMS update

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The number of active CPMS users is continuously increasing. Since year 2018, 65 new panels have been created. If you have any questions regarding CPMS, do not hesitate to contact the Endo-ERN CPMS helpdesk. CPMSHelpdesk@Endo.ern.net.eu

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ERN - Searchable tool

The European Commission website now hosts a searchable interface with details about ERNs for the public to search. The data concerned includes ERN names and details and ERN clinical centres names and details.

Upcoming events