
DISCOVERY: Rare diseases are part of the human story: from prehistory to over 30 million Europeans today
More than 30 million people in Europe live with a rare disease today. Although rare diseases are often perceived as
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 27 EU member states+Norway 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.
Virtual consultations across national borders: expert care throughout Europe, no travel required.

More than 30 million people in Europe live with a rare disease today. Although rare diseases are often perceived as
Endo-ERN invites patients and families to take part in a new survey on transition of care, aimed at better understanding
Applications are now open for the 2026 Data, Ethics and AI training developed by EURORDIS and ERDERA, offering high-quality training

Endo-ERN is deeply saddened to share the news of the passing of Jette Kristensen, a founding ePAG of Endo-ERN and
As the year draws to a close, it is a great moment to look back on a set of clinical

The European Commission has published the first-ever Continuous Monitoring Report for the European Reference Networks (ERNs), covering the 2023–2024 reporting
This session is dedicated to the presentation of the International Recommendations on the evaluation and management of persistent hypoglycemia in
This endorsed Endo-ERN event is taking place 6-7 March, 2026 at Western Plus Tower Hotel, Via Lenin, 43| Bologna.
Register now for a joint ERN-EYE X Endo-ERN webinar taking place at 17:30 (CET) on Friday 27 February, Blepharophimosis Syndrome
Cancer-therapy related endocrine toxicities are increasing with the increasing use of immune-modulating and targeted anti-cancer treatments. In this webinar we

Register now for the next ESE Talks…Sarcopenia in Rare Endocrine Disorders is planned for Tuesday, 3 March at 17:00-18:30 (CET).
Find out about the application process and programme of the Rare Endocrine Disease Winter School, Varna, Bulgaria Saturday 28 Febuary
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.