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.

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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.

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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

Hypothalmic 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.

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Privacy Overview
Endo-ERN

Endo-ERN Privacy Policy

Endo-ERN is committed to user’s privacy and does not track personal data when visiting our website. We act in accordance with Regulation 2016/679 of the European Parliament and of the Council.

‘Personal data’ means any information relating to an identified or identifiable natural person. An identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as:

  • a name
  • an identification number
  • location data
  • an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person

Cookies

Endo-ERN only tracks anonymised data for statistical purposes. We do this via analytical cookies, placed through an anonymous IP Google analytics tag. The purpose of these cookies are to track the efficiency and success of the website.

These cookies do not store any personal data that can be linked to a natural person, but may save data such as inter alia, data about the website from which a person has come (the so-called referrer), which sub-pages were visited, or how often and for what duration a sub-page was viewed. The data collected through this is general data only, and cannot be traced back to one person.

It is possible to prevent the setting of cookies, by means of a setting of the Internet browser used. On top of that, already set cookies may be deleted at any time via an Internet browser or other software programs. This is possible in all popular Internet browsers.

Google Analytics does not share any data with third parties.

The principles of data protection do not apply to anonymous information and because these cookies minimally impact the privacy of the user, it is not necessary to ask for permission to use these cookies.

Newsletter

You may always unsubscribe from our newsletter at any time through the unsubscribe button located in our newsletter. Endo-ERN is both the controller and responsible for processing of any data regarding the newsletter. Endo-ERN does not make use of a third party for the Newsletter service.

E-services

Endo-ERN has a contact form, which activates your email software and allows you to send a comment or question to a general email address. When you send such a message, your personal data is collected only to the extent necessary to reply. If the team responsible for the mailbox is unable to answer your question, or your questions has regards to another party, it might forward your email to another service.

If you have any questions about the processing of your email and related personal data, do not hesitate to include them in your message.

The collected personal data and all information related to the above mentioned consultation is stored on the email server of the Endo-ERN Coordinating office and potentially those who have been concerned in the correspondence in order to respond to your comment.

Newsletter Tracking

The Endo-ERN newsletter makes use of tracking in order to be able to conduct a statistical analysis of the success or failure of online marketing campaigns. Endo-ERN may see if an email containing a newsletter was opened by a user, when it was opened, and which links were opened. 
The data collected through this tracking is generated and stored by Endo-ERN and is not shared with third parties, but may be used to adapt future content of newsletters in order to better meet the interests of our subscribers.

Contact details

For any questions regarding our privacy policy, please contact the Endo-ERN coordinating office.

You have the right to be forgotten and removed completely from the Endo-ERN contact database. To request this, please contact the Endo-ERN coordinating office.

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

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