
DOWNLOAD NOW: CPMS 2.0 App now available in the Apple and Android stores
Another significant milestone in ERN history – CPMS 2.0 mobile app now available for download in the Android and Apple
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.
Another significant milestone in ERN history – CPMS 2.0 mobile app now available for download in the Android and Apple
The European Registries for Rare Endocrine and Bone Conditions (EuRREB) has launched a new initiative: the EuRREB Participating Centre Voucher.
Our colleagues in the European Registries for Rare Endocrine and Bone Conditions (EuRREB) are excited to announce that the Langerhans
This publication from our EuRREB colleagues, Developing a Standardised Dataset for Natural History Studies in Fibrous Dysplasia/McCune-Albright Syndrome (FD/MAS), is
Endo-ERN co-coordinators Alberto Pereira and Olaf Hiort welcomed 143 representatives from 93 reference centres, as well as 13 ePAGs in
Now open! A facilitation window for the MOOC Diagnosing Rare Diseases: from the Clinic to Research and back is open
The 4th International Workshop on Klinefelter syndrome with the theme: A lifelong journey: new answers to old questions will be
Dates: Monday 20 and Tuesday 21 April 2026 Location: Athens, Greece We are very much looking forward to gathering
Please register for this planned webinar Wednesday, 29 October at 17:00-18:00 (CET). This webinar will cover the recommendations in-depth from
Join EuRREB for their Registries Symposium, where engaging discussions, ground-breaking insights, and meaningful networking await. Don’t miss the opportunity to
REGISTER now to attend the virtual event of the well-known SDMregistries meeting. Planned for Thursday, 12 June – Friday, 13
Upcoming 25-26 October in Madrid, Spain the ICFDMAS Consortium Meeting. There is a preliminary Programme available put together by local
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.