Discussion on diagnosis and treatment of rare or low prevalence complex disease or conditions across national borders through the Clinical Patient Management System (CPMS), a secure web-based application, to provide advice to the medical center in charge of patients
Generation of scientific knowledge and its dissemination in the form of scientific publications, guidelines, and supplements
Development and implementation of theRarERN Path methodology that aims to create a single reference organizational model for patients’ care pathways, which helps to ensure an improved, cost-effective, and patient-centered equal care to rare and complex patients
Close collaboration with all relevant stakeholders such as clinicians, patient representatives, other ERNs, national hospital networks for rare disease, national healthcare providers, research centers, etc.
In addition, 5 ERN ReCONNET Working Groups (WG) formally established, are focused on:
ERN ReCONNET is not directly accessible to individual patients. However, with a patient’s consent and in accordance with the rules of their national health system, a patient’s information can be referred to the relevant ERN ReCONNET member in their country by their healthcare provider. Consultations are done through the CPMS; only ERN ReCONNET members have access to this collaborative platform.
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