NEW ePAG: Welcome Bernd Rosenbichler
Endo-ERN is happy to welcome a new ePAG to the organisation. Bernd Rosenbichler of Alström Syndrom e.V., Germany has joined
Endo-ERN is focused on 8 main thematic groups (MTGs) which cover rare and/or complex endocrine conditions
Endo-ERN is a network of 100+ Reference Centres (RCs) in 28 EU member states that offers access to clinical experts for patients with rare endocrine conditions.
Endo-ERN is the network for rare endocrine conditions providing healthcare professionals with access to a variety of resources to support patient care.
If you work at a member institution this page will help with your Endo-ERN contributions.
Access to rare disease expertise without the need to travel is a core ERN objective. Our ePAGs contribute to all Endo-ERN activities.
Endo-ERN is a network connecting patients and healthcare providers across Europe, aiming to provide knowledge and resources for diagnosis and treatment of rare endocrine conditions.
Endo-ERN’s rare disease registries help to support better global scientific research and development. One of the main goals is to implement the patient voice at the core of research needs and the forming of guidelines.
Virtual consultations across national borders: expert care throughout Europe, no travel required.
Endo-ERN is happy to welcome a new ePAG to the organisation. Bernd Rosenbichler of Alström Syndrom e.V., Germany has joined
Endo-ERN is delighted to announce our partnership with The World Orphan Drug Congress Europe. This event is the largest and
Recently the Alström community came together to learn from one another and share their stories. This year’s event was bigger
The Umberto I Polyclinic is at the forefront in the management of Rare Diseases, having established the Interdepartmental Center for
Endo-ERN ePAG Johan de Graaf continues to raise awareness of rare disease with his data-based storytelling. He was recently invited
Endo-ERN ePAGs are involved in all aspects of the work of Endo-ERN. In addition they are very engaged in their
A presentation by Professor Janielle vander Velden, paediatric endocrinologist and expert in Turner syndrome. Topics to be covered will be
Speakers: Matt Bolz-Johnson, Healthcare Advisor, EURORDIS and Michelle Battaye, ERN Manager, ERN eUROGEN Panelists: Dalia Aminoff, AIMAR ODV – ETS,
Organised by EURORDIS a webinar is planned for 12 March, 2024 at 18.00 – 18.45 CET. The speaker is Jean
Save the date in your calendar and check back for more information. Or register for our newsletter to be kept
Save the date in your calendar and check back for more information. Or register for our newsletter to be kept
Register now for this upcoming webinar on Tuesday, 9 April. Featuring Matthias Kroiss, Professor of Medical Endocrine Oncology at the
Participating Reference Centres
Clinical Patient Management System (CPMS), a secure web-based application that supports the European Reference Networks in the diagnosis and treatment of rare or low-prevalence complex diseases or conditions across national borders, our multidisciplinary teams of experts are able to give virtual consultations to diagnose, suggest treatment or surgery, and then provide post-operative and transitional support.
Access CPMS
For classification of endocrine conditions, there are eight main thematic groups (MTG) defined within Endo-ERN. These MTGs are organ and/or physiology based, cover care throughout the entire lifespan of patients and cover the total spectrum of congenital and acquired conditions.
MTG1
Rare adrenal disorders comprise those with hormonal oversecretition and/or overgrowth and those with inappropriate low endocrine functionality. Oversecretion and tumour growth often requires surgical or targeted medical therapy, patients with adrenal insufficiency need hormonal replacement therapy.
MTG2
Calcium and Phosphate Homeostasis is of major importance to a large number of hysiological processes thereby affecting several organ systems typically bone, muscles, kidney, brain with consequences on quality of life and risk of chronic disability.
MTG3
For genetic disorders of glucose and insulin homeostasis 3 subthematic subgroups are defined: Insulin-resistance syndrome; Hyperinsulinism and other forms of hypoglycemia Rare diabetes mellitus.
MTG4
Multi-organ conditions that are dominantly inherited, and manifest throughout childhood and adult life. In recent years predictive testing has been introduced, with patients being identified in the preclinical state, and often in early childhood.
MTG5
A group of imprinting disorders for which care have been well organised: Prader Willi Syndrome, Silver Russell Syndrome, and Beckwith Wiedemann Syndrome and a group of Growth hormone and IGF-I insensitivity including Laron and Noonan Syndrome, as well as other overgrowth and growth retardation syndromes.
MTG6
Rare pituitary disorders are a group of various clinical syndromes with low prevalence (main groups 100-500 million, specific diseases/genetic disorders less than 1 million) requiring multidisciplinary and lifelong care because of the central endocrine function of the pituitary.
MTG7
This Main Thematic Group (MTG) is dedicated to the Disorders of sex development (DSD) and the Disorders of sex maturation (DSM). These are medical conditions involving the reproductive system in both sexes.
MTG8
There are 3 subthematic groups for Thyriod: a) Rare Thyroid Hormone Signaling Disorders (causing defect in thyroid hormone signaling and action), b) congenital hypothyroidism (a rare disorder for which all newborns in the EU are screened immediately after birth) and hyperthyroidism, and c) non-metastatic thyroid carcinoma.
Access to rare disease expertise without the need to travel is a core ERN objective. Our ePAGs contribute to all Endo-ERN activities.
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