Attention Endo-ERN representatives! You are invited to participate in this important two-year project to develop a new ESE position statement: Self-management and support services for patients with Adrenal Insufficiency (AI).

This two-year project aims to:

Evaluate factors that influence self-managment for patients with AI (international cross-sectional survey adapted and translated in several languages) Explore current patient educaiton approaches and support services across Europe Develop an evidence-based Euorpean Position Statement using Delphi research methodology

You are invited to participate as a:

Principle Investigator to recruit patients with AI from your centre or country Patient advocacy group representives to disseminate the survey [...]

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Great news! Endo-ERN ePAG Johan de Graaf has been elected to EURORDIS Board of Directors during the organisation’s annual General Assembly 2024. Wishing you success Johan!

 

The full report on the EURORDIS website stated the following:

The elections saw the appointment of six members to the Board, including four re-elected and two newly elected members.

Avril Daly, Chief Executive Officer of Retina International, was re-elected to the Board. Following a meeting of the EURORDIS Board of Officers (taking place after elections) to the Board of Directors, Avril has been confirmed to continue as President [...]

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Endo-ERN would like to welcome our newest ePAG Esther Bloem.

 

Esther has been utilising her skills and experience to support and educate patients. A policy advisor for the Dutch Thyroid Organisation (Schildklier Organisatie Nederland), she is involved in various projects and represents the patient’s perspective of people with thyroid disorders.

 

A scientist by training, Esther is committed to developing evidence-based support tools to help people with thyroid disorders. She created the online group coaching programme Quality of life while living with a chronic disease. Most recently a project that Esther is leading received funding from the ZonMw a [...]

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EURORDIS has created an Open Letter to the European Commission outlining crucial steps for rare disease to be taken following next month’s European Action Plan for Rare Diseases that bridges diverse policy areas and streamlines existing efforts with clear, measurable objectives. Find the letter here and consider signing individually and/or as a representative of your instituition.

 

Deadline for signature Monday, 3 June, 2024.

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A newly published Endo-ERN guideline was presented today at the European Congress Endocrinology in Stockholm – Familial hyperaldosteronism: an Endo-ERN clinical practice guideline. The guideline features 19 recommendations on the following topics:

 

Screening and diagnostic workup Therapy in FH Follow-up with patients with FH

 

Check out the guideline now.

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Are you attending the European Society of Endocrinology (ECE) in Stockholm, Sweden? You are invited to the Endo-ERN Symposium on Tuesday, 14 May from 12:00-13:30. Check out the agenda below:

1200

Endo-ERN introduction, Prof. Alberto Pereira, Amsterdam University Medical Center, the Netherlands & Endo-ERN Coordinator

1210

Guidelines on familial hyperaldosteronism, Prof. Olaf Dekkers, Leiden University Medical Center, the Netherlands and Prof. Paolo Mulatero, University of Torino, Italy

1240

SDHB and SDHD guidelines, Prof. David Taieb, Aix Marseille University, France

1305

Pituitary tumors: Looking for patients reported outcomes not yet managed, Dr. Elena Valassi, Universitat Internacional de Catalunya, Barcelona, Spain.

 [...]

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The first European endocrinology textbook developed by the members of European Reference Network on Rare Endocrine Conditions (Endo-ERN).

Discover this extensive illustrated textbook of endocrinology created primarily for students and residents. Written by experts of the European Reference Network on Rare Endocrine Conditions (Endo-ERN), the Handbook of ENDOCRINOLOGY and METABOLISM describes commonly managed conditions, as well as providing information about exceptional rare endocrine conditions.

Topics covered include common conditions of the endocrine system, metabolic disorders, inherited conditions, and endocrine emergencies. With clinical application in mind, the chapters include illustrations and tables, as well as the latest information about [...]

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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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