IMPACT: Endocrine Connections Special Collection with Endo-ERN

Endo-ERN has partnered with Endocrine Connections to support the collaborative research efforts of our members in the network. In the last 18 months that has resulted in the publication of 19 articles.

These articles are of interest with an average of 690 downloads and 1378 pageviews. An impressive 13 of the publications have been cited with no doubt more to come.

Download (, 675 KB)

the most up-to-date impact summary to find out more.


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To help Endo-ERN members plan more effectively, recurring meetings have been set for some of the MTGs. see our manual
HERE (, 843 KB)

MTG experts will receive an invite directly. If you do not please contact the CPMS helpdesk.

MTG1: Every 2 months, 1st Thursday @1500

Thursday 7 Sep @15:00

Click for more info (, 81 KB)


MTG2: Every month, 2nd Monday @13:00

Monday 11 Sep @13:00

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CONTRIBUTE: Rare Barometer Newborn Screening

The new Rare Barometer survey on newborn screening for rare diseases is now live!

It should take no more than 20 minutes to complete and closes on July 23, 2023.

Through asking questions on the possible benefits and disadvantages of screening newborns for rare diseases, for example in terms of anxiety, access to care or adjustments to family life, we will make sure that your opinion is taken into account when shaping the future of newborn screening.

This survey is open to people living with a rare disease and their family members from any country in the world. It [...]

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OPPORTUNITY: Post-doc position at IRCCS Istituto Auxologico Italiano

Two exciting opportunities are available at one of Endo-ERN’s reference centres!

Both positions are available at the laboratory of Prof. Luca Persani at Istituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico (Milan, Italy) to work in the field of congenital thyroid disorders.

You will find a detailed job description and application instructions here: APPLY NOW (, 339 KB)



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CONTRIBUTE: Survey exploring testosterone methodology

You are kindly invited to participate in a survey exploring testosterone methodology in clinical units and laboratories throughout Europe. Endo-ERN members UZ Leuven and Ghent University Hospital are managing the survey.

Currently, different methods are used to measure testosterone and SHBG, hampering harmonized clinical use of (free) testosterone. With this survey, we want to map current clinical practices on methods to measure testosterone and SHBG in clinical units and laboratories in Europe.

The results of this survey will be used to propose harmonization efforts for testosterone and SHBG measurements.

Access the survey.

We [...]

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ERN Clinical Exchange Programme: Amsterdam to Basel

Inspiration and innovation were the driving forces behind Dr Dirk Jan Stenvers application to the ERN Exchange Programme.

Dr Stenvers, a clinical endocrinologist at Amsterdam UMC, had his interest piqued by recent publications and congress presentations by the Endocrinology team at University Hospital Basel, Switzerland. Development of copeptin-based diagnostic tests for arginin vasopressin deficiency (previously known as diabetes insipidus) is just one example of innovations that the UHB team are working on. Copeptin based tests are a welcome alternative to the water deprivation test which is a challenging experience for most patients.

Over the course of 4 days, exchange host [...]

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ERICA SURVEY: ERNs Clinical Research

This survey aims to collect information on the status quo on ERNs and Clinical Research.
It is developed by ERICA WP4 Clinical Trial Support on the basis of the previous survey delivered in 2018.
The results of the two surveys will be compared to provide a more comprehensive state-of-the-art of ERNs and clinical research.

The survey is addressed both to ERN Coordinators and their ERN HCP members.

Please fill in the survey here:

The survey will be open until 15th June.

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SURVEY: Public Consultation on the Strategic and Innovation Agenda of the RD Parnership is now open for public consultation

Under Horizon Europe, the European Commission together with member states and associated countries decided to implement the Rare Diseases Partnership which brings a unique vision that aims at leaving no one behind by supporting robust patient need-led research, by utilising and maximising the power of health and research data, by engaging and coordinating regional, national, EU and international alignment in order to accelerate the development of new treatments and diagnostic pathways.

To build its strategy on the voice and input of all stakeholders and as part of the preparatory process of this future Rare Diseases Partnership (foreseen start in 2024) [...]

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Endo-ERN GA Highlights

Over 150 members of Endo-ERN gathered at the Amsterdam UMC earlier this month for the annual Endo-ERN General Assembly (GA). The was the first in-person meeting of our members since 2019.

It was a productive 2 days with nearly 20 interactive sessions. Our members were very engaged with valuable presentations from external speakers that included:

Landscape of Rare Disease Research in Europe, Christina Kyriakopoulou, European Commission and Mari Murel, ERICA Best Practise Designing Clinical Trials for Rare Endocrine Disease, Ralf-Dieter Hilgers, University Hospital Aachen ESE &ESPE Rare Disease Committee Update

Other sessions focused on network activities including main thematic groups [...]

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NEW: Registries website

Today is an exciting day for our EuRRECa colleagues. A project that has been in the works for weeks and the launch date is finally here!

We are excited to announce their new website:

There could not be a more perfect time to launch it than on 3 April 2023 during the first EuRRECa / EuRR-Bone joint symposium.

With new features tailored to patients, clinicians and researchers, teasers of upcoming events, news and so much more!

Whilst it may not be perfect, they are still working on it. The site will be under construction over the next few [...]

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