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