European Reference Networks (ERNs)

Are you a patient or parent of a patient with a rare or complex Autoinflammatory, Autoimmune or Primary Immunodeficiency Disease in need of highly specialised care?

Are you a physician seeking help with diagnosis or treatment because of the rare nature of the disease?

 

Rare diseases are quite challenging and difficult to correctly diagnose and treat. This is why the ERNs were launched by the European Commission in 2017. ERNs stands for European Reference Networks and there are 24 different networks covering a wide range of conditions. These  are virtual networks involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States.

 

The aim is to facilitate discussion on complex or rare diseases and conditions. It often requires highly specialised treatment and a concentration of knowledge and experience, which due to the complex nature of these diseases, very few doctors have.

 

ERN RITA is the network dealing with Rare Immunodeficiency, Autoinflammatory and Autoimmune diseases.

To help patients and clinicians, an online platform for virtual clinical consultations called CPMS (Clinical Patient Management System) was developed. Instead of the patient traveling abroad to see specialists, the information does the traveling.

 

Each ERN has access to the CPMS where clinicians can upload patient cases. The platform allows European specialists in the field to collaborate virtually with one another by forming panels with other clinicians. They all jointly review each case and present their diagnosis and recommendations for treatment to the treating physician. It’s then up to the treating physician to decide if he follows these recommendations or not.

 

For more information on the ERNs, please watch this video

 

This is how the CPMS works:

Does your disease fall under:

Autoimmune?

Autoinflammatory?

PID?

CPMS

The treating physician can contact the CPMS through this link for a virtual consultation.

The information must be uploaded to the CPMS completely anonymously!

If you have any questions or concerns, please contact the CPMS helpdesk.

Patients or parents, please contact Malena Vetterli at info@fmfandaid.org.

 

RITA Board and RIPAG (patient representation) Board member, as well as Chair patient representative for all ERN-RITA working groups. For more information, please visit the RITA website.

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