
FUNDING CALL: FIRENDO X Endo-ERN Collaboration
The FIRENDO (Filiere Maladies Rares Endocriniennes) network will award a grant for the period 2025-2027 to fund a collaborative research
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.
Attend the Endo-ERN symposium @Joint Congress of ESPE and ESE 2025
Tuesday, 13 May, 10:30-12:00 Location: Hall A
Visit the Endo-ERN Booth 44&45
Endo-ERN colleagues and ePAGs will be there to tell you more about our network activities. EuRREB team members will be there too!
The FIRENDO (Filiere Maladies Rares Endocriniennes) network will award a grant for the period 2025-2027 to fund a collaborative research
Endo-ERN will have participate in several aspects of the at the Joint Congress of European Society for Paediatric Endocrinology (ESPE)
Our colleagues in EuRREB have recently published their Core Registry and e-REC Annual Reports which showcase significant growth in partipation
The European Society of Endocrinology (ESE) has launced a new educational programme aimed to address the unmet needs of the
The key findings from the latest EURORDIS Rare Barometer survey revealing widespread barriers faced by the 30 million people living
Endo-ERN would like to welcome our newest ePAG Marta Baranska. Marta is the founder and representative of the non-profit organization
Register now for this webinar focused on Cushing’s disease featuring European experts and an Endo-ERN ePAG. Planned for Tuesday, 10
Save the date and register now for a webinar from Endo-ERN’s MTG1:
Save the date for this planned webinar on 4 November, 2025 at 1700-1800 CEST. More information including speakers and chair
Save the date for this planned webinar on 2 September, 2025 at 1700-1830 CEST. More information including speakers and chair
Congenital combined pituitary hormone deficiency (CCPHD) is a rare and heterogeneous disease entity, usually defined as at least two pituitary
Call for abstracts is now open for the upcoming European Society for Paediatric Endocrinology (ESPE) and French rare diseases healthcare
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.