About the Network

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.

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.

Two flyers have been developed explaining the added value Endo-ERN has to offer patients and explaining the trajectory to the Clinical Patient Management System (CPMS). This is the system that is used to discuss rare patient cases on an international and interdisciplinary level.

Download our information flyers for more information (available in English, French, German, and Italian).

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.

EU 3^rd Health Programme

ERNs are based on the EU 3rd health programme and therefore adds to all the following objectives:

 

1. Promoting health, preventing diseases and fostering supportive environments for healthy lifestyles taking into account the ‘health in all policies’ principle.

   Endo-ERN will thrive on an equal distribution of paediatric and adult endocrinology covering all aspects throughout the life-span. The solutions that will be realised by Endo-ERN will empower patients (improved self-care when living with a rare endocrine disease, promoting a healthy lifestyle in the context of such disease) and clinicians (improved knowledge, improved screening strategies, to earlier and proper diagnosis of rare endocrine diseases). This will promote overall health and help minimise the negative impact of rare endocrine diseases.

2. Protecting Union citizens from serious cross-border health threats.

   Endocrine diseases are not generally transferable, and do not pose an immediate threat in that sense. Receiving sub-standard care, however, could be seen as a threat. Guaranteeing the same level and quality of care for rare endocrine diseases in all EU member states will mean that the fact that you live in a different member state will no longer implicate a health threat because of receiving improper care.

3. Contributing to innovative, efficient and sustainable health systems.

   Health systems to standardise quality and levels of (or, removing inequalities) care across Europe are currently mostly absent and are a novelty. Standardised guidelines and practices will make healthcare more efficient, as the same best practices are followed everywhere, the same treatments are used, etc. It makes systems more sustainable; economically because the standardisation is likely to result in cost reductions; from a knowledge preservation point of view because more people will work with and on the same guidelines and knowledge.

4. Facilitating access to better and safer healthcare Union citizens.

   Endo-ERN will establish EU-wide portals for patients; families, and clinicians that facilitate access to high quality disease information (for patients, families and care providers) and that enable better diagnosis and treatment (tool for care givers). These aspects will result in overall better and safer healthcare.