Endo-ERN ePAGs are involved in all aspects of the work of Endo-ERN. In addition they are very engaged in their own organizations and local community activities. Petra is very involved in the pituitary and adrenal communities and shared the following highlights:

At the national congress of the Network for Pituitary and Adrenal Disorders an event was organized specifically for MEN patients. In addition, there was a lecture on aspects of endocrine surgery in MEN patients and recommendations for screening. Dr Antje Redlich, co-chair of MTG 4 and active in Magdeburg, also gave an interesting lecture on MEN 2. This [...]

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Jette Kristensen, President of Addison Foreningen Danmark (Danish Addison Patient Association) and Endo-ERN ePAG was kind enough to share this example of European cooperation, which showcases the power of patient networks.

Travelling abroad – and then finding out you’ve forgotten your medication. It’s a nightmare scenario for any Addison’s patient.

But that’s exactly the situation Holger, one of our members, found himself in when he went on holiday to Italy in August this year: he had forgotten his Florinef. He posted a message in our Facebook group asking if anyone else had experienced the same thing and if so, [...]

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Have you registered for the Endo-ERN General Assembly? This event will take place 23-24 April in Milan, Italy at the Radisson Blue Hotel.

The deadline for our special event rate for hotel rooms has been extended until February 22, 2024. You can find out more about programme and how to travel to the event at our dedicated GA section on our website. Click here to explore.

We look forward to seeing you in Milan!

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The European Economic and Social Committee (EESC) organised a memorable conference on Rare Diseases and European Reference Networks (ERNs) under the auspices of the Spanish Presidency of the Council of the EU and in cooperation with the authorities of the Basque Country, on 11 October 2023 in Bilbao. Endo-ERN staff from the project office were in attendance.

The conclusions of the conference are now available on the on the event’s webpage, where you will also find reports, photos, presentations, recordings and press articles.

The hope is that this event will be followed by many more projects where [...]

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

Several PhD postions are available at the University of Lubeck’s Collaborative Research Center (CRC) 1665. Sexdiversity – Determinants, Meaning and Effects of Gender Diversity in Socialcultural, Medical and Biological Contexts is dedicated to researching the diversity of biological sex over the next four years.

Check out more information about CRC 1665 and the available positions.

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The Continuous Monitoring exercise for Endo-ERN HCPs (Full Member and Affiliated Partners) for 2023 data will run from January 1- February 29, 2024.

You should’ve received an email with all the relevant information. You can also refer to this webpage and if you have further questions contact the Endo-ERN project office.

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As we come to the end of 2023, we want to reminder all members that a minimum of 1 patient virtual consultation should be held per member healthcare provider.

This can include a virtual meeting or just seek written opinions within the CPMS. If you wish to set up a meeting we recommend to first check you relevant MTG regular meeting slots.

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Endo-ERN ePAG Diana Kwast-Hoekstra was recently appointed to the Therapies Scientific Committee of the International Rare Disease Research Consortium (IRDiRC).

“With my nomination and involvement I will be happy to take my acquired knowledge and experiences as a nurse scientist and ePAG at European level and bring it to the attention of the other members of the TSC, in order to achieve the goals of the IRDiRC as much as possible. In my opinion, knowledge and experiences know no boundaries and should always be used to improve care for people with rare conditions.”

The IRDiRC teams up with [...]

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Drug shortages and drug repurposing are hot topics in the rare disease community as highlighted by Endo-ERN ePAG Joahn de Graaf at the Endo-ERN symposium at EPSE in September..

New IRDiRC board member Diana Kwast kindly shared this resource that might of interest the the wider rare endocrine disease community.

The commentary IRDiRC Drug Repurposing Guidebook: making better use of existing drugs to tackle rare diseases has been published in Nature Reviews Drug Discovery.

This guidebook, authored by the IRDiRC Task Force “Drug Repurposing Guidebook” facilitates drug repurposing for [...]

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