Our Activities

ERN ReCONNET’s Activities

ERN ReCONNET’s activities include:

• 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 of education and training projects like webinars and the ERN Exchange Program
• Development of the TogethERN ReCONNET Patient Registry
• Development and implementation of the RarERN 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:

• WG Education and Training
• WG Patients’ Partnership
• WG Research and Quality of care
• WG Registry and eHealth
• WG ERN young

 

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.