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)
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.
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 [...]
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: https://ec.europa.eu/eusurvey/runner/ERICAsurvey
The survey will be open until 15th June.
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) [...]
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 UpdateOther sessions focused on network activities including main thematic groups [...]
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: www.eurreb.eu
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 [...]
Diana Kwast-Hoekstra of the Dutch Pituitary Foundation participated in the Eurordis: Rare Disease Week in Brussels. Diana is an Endo-ERN ePAG representative for MTG1.
While in Brussels, Diana and other patient representatives had the opportunity to raise awareness of rare disease in meetings with key MEPs and other policy-makers.
The delegation had Five Asks:
Advancing the development of orphan medicines Improving disability assessments Acting on mental health needs Optimising the European Health Data Space Launching a European Action Plan for Rare DiseasesThank you Diana and Eurordis for keeping rare disease at the top of the European health agenda!
The work of Endo-ERN’s ePAGs took them across the Atlantic recently as they attended the International Coalition of Organizations Supporting Endocrine Patients (ICOSEP) meeting in Orlando, FL, USA. Attendees were treated to an international panel that covered topics such as:
Treatment challenges in various countries Role of patient support organizations Inclusion of Hormones as Essential Medicines (EML) Strategies for success Patient adherence Best practice for social media and medicineJohan de Graaf of the Dutch Pituitary Foundation, and an ePAG for MTG6, gave a presentation Historical Review of Experiences in Merging Patient and Medical Groups that was very well received.
[...]
Endo-ERN in partnership with Endocrine Connections has created a Supplemental for Rare Disease Day 2023.
Available online, and as a shareable document, this special collection is overseen by the Editor-in-Chief, Adrian Clark and our network’s guest editors George Mastorakos (National and Kapodistrian University of Athens), Violeta Iotova (Medical University of Varna), and Jérôme Bertherat (Hopital Cochin).
Click here for the Endocrine Connections Supplemental Rare Disease Day 2023. Please share with your colleagues with an interest in rare disease within the network and beyond.
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