ERN ReCONNET

Patients

What’s an ERN

What’s an ERN

What are European Reference Networks?
The European Reference Networks (ERNs) gather doctors and researchers with high expertise in the fields of rare or low-prevalence and complex diseases. They are “virtual networks” which discuss the diagnosis and the best possible treatment for patients from all over Europe.24 ERNs were launched in 2017, involving more than 900 highly specialised healthcare teams, located in more than 300 hospitals in 26 European countries.

Can European Reference Networks help you?
The ERNs help patients with rare or low-prevalence complex diseases. A disease is defined as rare when it affects fewer than one in 2000 people, is serious, chronic and often life-threatening. Between 5000 and 8000 of rare diseases affect daily life of around 30 million people in the EU.Low-prevalence and complex diseases are conditions that combine a number of factors or symptoms and which are not common. They require a multidisciplinary approach with several possible diagnoses, are often difficult to test and interpret and/or have a high risk of complications.For such cases, the ERNs can bring the expertise that is often missing within your region or your country.

How can ERN ReCONNET help you?
ERN ReCONNET aims to improve early diagnosis, patient management, care delivery and virtual discussion of clinical cases within the network and with affiliated centres. The use of information technologies (IT) will facilitate interaction between centres. The network will improve scientific knowledge of Rare connective tissue and musculoskeletal diseases (rCTDs) and facilitate the creation of large databases to identify new clinical or biological markers to aid diagnosis. Educational programmes for patients and families will be developed and disseminated, and new guidelines and quality measures will be implemented. Improved therapeutic protocols and greater patient involvement are also priorities.

What are rCTDs?
Rare connective tissue and musculoskeletal diseases (rCTDs) comprise a large number of diseases and syndromes, with a tremendous impact on patient well-being. These include hereditary conditions, and systemic autoimmune diseases such as systemic sclerosis, mixed connective tissue diseases, inflammatory idiopathic myopathies, undifferentiated connective tissue diseases, and anti-phospholipid syndrome. Delayed diagnosis, particularly for rare or complex presentations, is a common problem. This network groups rCTDs into three main thematic groups: rare autoimmune, complex autoimmune, and rare hereditary connective tissue and musculoskeletal diseases.

Do you need more info?
You can find more information about the European Reference Networks here
You can find the Information flyers for patients in all European languages here

 

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