About Endo-ERN

Endo-ERN logo
The European Reference Network on rare endocrine conditions (Endo-ERN) aims to improve access to high-quality healthcare for patients with rare hormonal disorders. For this purpose the education of Reference Centres (RCs) across Europe will be supported and developed to ensure that the best possible care is made available to patients locally.

Due to the intrinsic features of hormone action and the genetic basis of some conditions, the consequences of endocrine conditions are usually not restricted to a single organ, but instead overlap in multiple organs. Endocrine disorders also often span across the entire lifetime of a patient. Therefore it is of vital importance that the unmet needs of this patient group are met by an overarching network with a broad expertise covering all endocrine glands and challenges from birth until adulthood.

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How will Endo-ERN help Patients?

Endo-ERN’s mission is to reduce and ultimately abolish inequalities in care for patients with rare endocrine conditions in Europe through facilitating knowledge sharing and related healthcare and research. Endo-ERN provides equality between paediatric and adult patients.

It aims to shorten the patient pathway by increasing awareness amongst healthcare professionals on endocrine conditions and shorten the delay in diagnosis through the facilitation of expert consultation and tele-medicine. On top of that Endo-ERN aims to empower patients through, among others, education and training of delegates.

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 To find out more download our information flyers. 

Main objectives have been defined what Endo-ERN aims to achieve.

  1. To mitigate differences across geographies and primary and secondary care in awareness and knowledge regarding diagnosis and treatment that affect quality of care of rare endocrine disorders. To achieve this, a dedicated training programme will be established and implemented.
  2. The reinforcement of research and epidemiological surveillance will be installed in a step-wise fashion to prioritise network expertise. The network will list questions pointing towards research needs and new management avenues opened by translation of research in diagnostics and treatment of rare endocrine conditions.
  3. To optimise the communication and interaction interfaces between healthcare professionals and patients and within these communities. Facilitating mobility of expertise will be promoted by the use of communication technology to provide care to patients within its area of expertise. The ERN will use ICT tools at three levels to provide care to its patients: 1. communication between professionals, 2. communication between professionals and patients, as well as 3. communication among patients. This will be accomplished by involving representatives from European patient advocacy groups.
  4. To inventory and validate the current standards of patient care with the ultimate aim to create a single, easy-access platform containing all existing and future information. The development of guidelines that are specifically equipped for rare endocrine disease by standardised descriptions of hormone dynamics, depending on physiology, gender, body composition, and age(ing). Development of quality and safety benchmarks and spread of best practices will be done through the above mentioned development of standards in diagnostic and care.
  5. Helping Member States with an insufficient number of patients with a particular medical condition will be facilitated through specific arrangements for referral or electronic consultation to a centre within the network, engagement in specific network educational and Training activities, and possibilities to collaborate with the implementation of new guidelines developed by the network.

 EU4Health programme 2021-2027

The next phase of healthcare development is the EU4Health programme.  The programme has a vision for a healthier European Union with the main aim to:
  • Improve and foster health
  • Protect people
  • Access to medicinial products, medical devices and crisis-relevant products
  • Strengthen health systems
Find out more about EU4 Health programme.
 
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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
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  • 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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