The first call for applications for the Endo-ERN Clincial Exchange Programme is now open! Early application is encouraged with the call closing on July 1, 2024.

The ERN Clinical Exchange Programme has been designed to share knowledge, strengthen the clinical capacities across the network and to stimulate collaboration between healthcare professionals in European Reference Networks (ERNs) and beyond. The mission of Endo-ERN is to reduce present inequalities in rare disease care for patients with rare endocrine conditions.

Find out about the criteria and apply now.

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The 8th Endo-ERN was hosted in Milan by Luca Persani of Endo-ERN healthcare provider (HCP) member Istituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico, Italy. Held April 23-24, the Endo-ERN GA was attended by nearly 150 people from 89 different HCP members and ePAGs. The event featured 15 plenary sessions with topics such as:

New grant period 2024-2027 Roadmap to Copenhagen & Transition ERDERA Landmark Integration Project JARDIN Landmark Integration Project Patient journeys European medicine shortages: How can we avoid a disaster for patients with rare conditions?

 

There were updates from all 9 Endo-ERN work [...]

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Our colleagues at the European Society of Endocrinology have created an informative infographic for European Hormone Day: Why Hormones Matter.

Download now!

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Endo-ERN is happy to welcome a new ePAG to the organisation. Bernd Rosenbichler of Alström Syndrom e.V., Germany has joined MTG3. He shares his motivation to join Endo-ERN:

“Raising a child with a rare disease is – that may come as a surprise – a gift by nature. It changes the own perspectives on life, set priorities and opens the mind for totally different things, someone would have never recognized if there wasn’t such a special person.

But of course there is as well the reality of dealing with a rare disease: feeling left alone, not knowing where to [...]

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Endo-ERN is delighted to announce our partnership with The World Orphan Drug Congress Europe. This event is the largest and most established orphan drug & rare disease event worldwide. Meet over 2000 attendees, hear from 250 leading speakers, and connect with 130 exhibitors as we bring together experts from the start-to-finish of orphan drugs. From regulation and policy, to global pricing and gene therapy.

With this partnership we are delighted to inform you that Endo-ERN members are eligible for a free VIP pass. You can apply now: http://www.terrapinn.com/WODC/ENDO-ERN

Date & Location

22 October 2024 | Pre-Congress Workshops [...]

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Recently the Alström community came together to learn from one another and share their stories. This year’s event was bigger than ever before with families and professionals from 24 countries joining online.

There are recordings available and helpful infographics on topics such as:

 

Liver and semaglutide research Alstrom mouse model Good mental health and the road to independence Importance of sleep Paediatrics: my child’s growth, puberty & diabetes

Check out the full information including past event recordings here.

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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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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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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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