MEMBER ACTIVITY: Rare Open Day at Endo-ERN Azienda Ospedaliero-Universitaria Policlinico Umberto I

The Umberto I Polyclinic is at the forefront in the management of Rare Diseases, having established the Interdepartmental Center for Rare Diseases (CIMR), which coordinates the care of patients with Rare Diseases at regional, national, and international levels. This is made possible thanks to the full sharing of the objectives of the European Networks for Rare Diseases (ERN).
In light of this, to further strengthen the ongoing commitment in the field of Rare Diseases, on the occasion of the International Rare Disease Day, scheduled for February 29th, the Umberto I Polyclinic is organizing the first edition of the “Rare-Open [...]

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ePAG update: Johan de Graaf new EURORDIS Open Academy faculty

Endo-ERN ePAG Johan de Graaf continues to raise awareness of rare disease with his data-based storytelling. He was recently invited to join the faculty of the EURORDIS Open Acacdemy that will take place 3-7 June in Barcelona.

In addition he will present results on the quality of neurosurgery in the Netherlands at the CAPITAL coure taking place at the Leiden University Medical Center (LUMC) next month.

 

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ePAGS in action: Petra Brügmann of the German Network of Pituitary and Adrenal Diseases

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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ePAG story: Stay safe on holiday with a European network

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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EXTENDED: Hotel deadline for Endo-ERN General Assembly

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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INFO: Next steps for ERNs conclusions from Rare Disease Conference October 2023

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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OPPORTUNITY: PhD positions at Lubeck

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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APPOINTED: Diana Kwast-Hoekstra joins the IRDiRC Therapies Scientific Committee

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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