Endo-ERN Newsletter September 2019 ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏
September 2019
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Launch of the call for new members to join existing European Reference Networks

The European Commission has launched the call for members to join existing 24 ERNs, following the adoption of the Commission Implementing Decision (EU) 2019/1269 of 26 July 2019 amending Decision 2014/287/EU.

ESPE Meeting

ESPE group picture 2

Endo-ERN was present at the 58th Annual Meeting of the European Society of Paediatric Endocrinology from 19-21 September 2019 in Vienna, Austria. Again we shared a stand together with EuRRECa , and more than 250 participants attended the specific Endo-ERN symposium with presentations of Hermann Muller, Arlene Smyth, Edward Visser & Olaf Hiort.

Steering Committee & Advisory Board meeting in Vienna

Picture SCAB meeting Vienna

On Friday the 20th of September, Endo-ERN held its periodical SC/AB meeting at the ESPE Annual Meeting. In addition to an update by the coordinator, several new developments were presented and discussed.

Introducing Isabel Moenig

CPMS meeting

Isabel Moenig (Luebeck) recently started as paediatric clinical expert of our CPMS operational helpdesk. She visited Danielle Steenvoorden (Leiden) to discuss the developments and improvements of the Clinical Patient Management System (CPMS). We are delighted to welcome Isabel to our network.

"My name is Isabel Moenig and I am a paediatric resident in my third year in Luebeck, Germany. Together with Danielle Steenvoorden, operational helpdesk member of the Endo-ERN Coordinating Center in Leiden, I will support the experts in creating a panel, scheduling a meeting and making the video conferences a success. Therefore we would like to encourage everyone to invite us to new created panels, so we can help with the different steps. If there are any questions our email adress is cpmshelpdesk@endo.ern-net.eu"

Recent publication in Nature Reviews Endocrinology by Olaf Hiort et all

Addressing gaps in care of people with conditions affecting sex development and maturation.

Adult chair position MTG3

Picture Pietro Maffei

Andrew Hattersley had to step down as co-chair of Endo-ERN Main Thematic Group "Genetic Disorders of Glucose & Insulin Homeostasis". We are most grateful for his contribution to Endo-ERN. Since September Pietro Maffei (Azienda Ospedaliera di Padova, Italy) will now hold the Adult chair position of MTG3 together with Paediatric chair Thomas Danne (Kinderkrankenhaus auf der Bult Hannover).

Changes in European Patient Advocacy Group

Photo Martha Kirchoff

We would like to thank Marika Porrey for all her support and time but unfortunately she had to step back as ePAG for MTG8 Thyroid. Since September we welcomed Ms. Kirchhoff as a new patient representative for MTG 2 'Disorders of Calcium & Phosphate Homeostasis'.

Webex Affiliated Partners

Official welcome to our Affiliated Partners

On the 16th of September the Endo-ERN coordinating office organized a welcome & introduction meeting for our Affiliated partners who recently joined Endo-ERN. We are looking forward to a successful collaboration.

EJPRD

General Assembly EJP RD

Alberto Pereira and Charlotte van Beuzekom attended the first General Assembly of the European Joint Program on Rare Diseases in Gdansk, Poland. Endo-ERN is participating in several activities of this ambitious European program.

WP5 group picture

Inspiring meeting of WP5 on Diagnostic & Laboratory Analysis

A working group of WP5 members and both Endo-ERN coordinators had an inspiring meeting on 5-6th of September in Leiden for further developing their plans and activities.

Upcoming events

2019

2020