EU Reference Network Rare Endocrine Conditions ~ Endo ERN

Rare Endocrine Conditions
Endocrine Conditions

Endo-ERN is focused on 8 main thematic groups (MTGs) which cover rare and/or complex endocrine conditions

Go to overview

Categories

MTG1Adrenal

MTG2Disorders of Calcium & Phosphate Homeostasis

MTG3Genetic Disorders of Glucose & Insulin Homeostasis

MTG4Genetic Endocrine Tumour Syndromes

MTG5Growth & Genetic Obesity Syndromes

MTG6Hypothalamic and Pituitary Conditions

MTG7Sex Development & Maturation

MTG8Thyroid
About Us
About Us

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.

Go to overview

Who we are

About Endo-ERN

What we do

Reference centres

Work packages

Project team

Information

Events

FAQ

Newsletter

Contact

ERNs
For Professionals
For Professionals

Endo-ERN is the network for rare endocrine conditions providing healthcare professionals with access to a variety of resources to support patient care.

Our Network

About Endo-ERN

Find a Reference Centre

Research

Registries

Publications

Clinical Trials

Support Tools

Virtual Consultations

Guidelines

COVID-19

Training & Education

Webinars

Exchange Programme
For Members
For Members

If you work at a member institution this page will help with your Endo-ERN contributions.

Go to overview

Quick Links

The Journal

Member info

GA2025

MTG Representatives

CPMS 2.0

Evaluation

Continuous Monitoring Exercise

5-year evaluation

HCP Performance System
For Patients
For Patients

Access to rare disease expertise without the need to travel is a core ERN objective. Our ePAGs contribute to all Endo-ERN activities.

Go to overview

Patient information

What are European Reference Networks?

Cross-border healthcare

Rare endocrine conditions

Patient materials

ePAG information

European Patient Advocacy Groups

Patient representatives

How to become an Endo-ERN ePAG
Search

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 News

REGISTER: Upcoming Workshops Patient Rights and Rare Diseases in the European Union

The European Commission is hosting workshops in several countries with a focus on patient rights in cross-border healthcare and European

COMPLETE: Endo-ERN Transition of Care Working Group Survey

The Endo-ERN Transition of Care Working Group, invites you to complete this survey. The survey aims to gather valuable insights

REGISTRATION: ERDERA 2025 Joint Transnational Call for Proposals Info Webinar and Resources

The European Rare Diseases Research Alliance (ERDERA) Joint Transnational Call (JTC) for Proposals 2025 is now open! Submissions are invited

POSTER WINNER: Endocrine Medicine Shortages

Endo-ERN ePAGs Johan de Graaf, Dutch Pituitary Foundation and Petra Brügmann (EMENA) with Endo-ERN colleague Emily White (Endo-ERN) and Dirk

WINNER: Best Presentation Award in the category Oral: Clinical Trials

Congratulations to Endo-ERN researcher Edward Visser, Erasmus MC: University Medical Center Rotterdam who won the Best Presentation Award in the

REPORT & PRESENTATIONS: ERNs Evaluation Results Report

ERN members participate in an annual Continuous Monitoring exercise, and in 2023 there was the first 5-year evaluation process. The

REGISTER: 5th CAre for PITuitary Adenoma Leiden (CAPITAL) Course – Endorsed by Endo-ERN

Endo-ERN has endorsed an upcoming course by Endo-ERN HCP, Leiden University Medical Center (LUMC). Check out the full faculty list.

Endo-ERN Endorsed: Transition Adolescence and young adults – Endocrine diseases management 7th Conference

Register now for this event organised and featuring Endo-ERN members focused on the topic of transition. Hosted in Rome, event

SAVE THE DATE: ESE Young Endocrinologists and Scientists (EYES) Meeting

The 12th ESE Young Endocrinologists and Scientists (EYES) Meeting is taking place on 26-28 September 2025, in Milan, Italy. More

SAVE THE DATE: European Congress of Endocrinology (ECE) 2026

The European Congress of Endocrinology (ECE) will take place in Prague, Czech Republic, from 9 – 12 May 2026. Save

REGISTER: Together4RD & ERICA industry collaboration webinar

REGISTER: ESE Talks…Rare Diseases Hypothalamic Obesity: Treatment modalities and pre-requisites for treatment efficacy

Register now for the next joint ESE, Endo-ERN and ESPE webinar: Hypothalamic Obesity: Treatment modalities and pre-requisites for treatment efficacy

Participating Reference Centres

For Healthcare Professionals

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

Endocrine Conditions

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

Adrenal

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

Disorders of Calcium & Phosphate Homeostasis

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

Genetic disorders of Glucose & Homeostasis

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

Genetic Endocrine Tumour Syndromes

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

Growth & Genetic Obesity Syndromes

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

Hypothalamic and Pituitary Conditions

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

Sex Development & Maturation

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

Thyroid

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.

For Patients & Families

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 Newsletter

Subscribe to our email newsletter for useful information and valuable resources.

News

Events

Information

Social Links

Contact

Endo-ERN
Coordinating Center
Meibergdreef 9
1105 AZ AMSTERDAM
The Netherlands

info@endo-ern.eu

Website design by Elan Creative

Endocrine Conditions

Categories

About Us

Who we are

Information

For Professionals

Our Network

Research

Support Tools

Training & Education

For Members

Quick Links

Evaluation

For Patients

Patient information

ePAG information

Endo-ERN News

For Healthcare Professionals

Endocrine Conditions

Adrenal

Disorders of Calcium & Phosphate Homeostasis

Genetic disorders of Glucose & Homeostasis

Genetic Endocrine Tumour Syndromes

Growth & Genetic Obesity Syndromes

Hypothalamic and Pituitary Conditions

Sex Development & Maturation

Thyroid

For Patients & Families

Endo-ERN Newsletter

News

Events

Information

Social Links

Contact

Information video for patients and healthcare professionals

Type and Press “enter” to Search