Interview with Malena Vetterli, Board Member of the European Reference Network for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases.

1. Dear Malena, would you please briefly introduce to our readers ERN-RITA and its patient council RIPAG?

ERNs (European Reference Networks) are virtual networks involving healthcare providers (HCP) from across Europe to facilitate discussion on complex or rare diseases that require highly specialised treatment, concentrating knowledge and resources. ERN RITA is the abbreviation for Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases Network. RIPAG is the patient representation within ERN RITA. It has four arms: Primary Immunodeficiencies, Autoinflammatory, Autoimmune diseases, and paediatric rheumatology.

2. How does RIPAG ensure that patient and healthcare professionals priorities are aligned as part of ERN-RITA activities?

Patient representatives are actively and equally involved throughout all activities. This is accomplished by having a RIPAG board and also by having one patient representative per disease arm as part of the RITA Board, along with the clinicians.

3. As of January 2022, ERN-RITA now has two Czech centers as full members (from General University Hospital and Motol Hospital in Prague). What benefits can Czech patients expect in relation to this connection at the European level?

It brings the knowledge that ERN-RITA has to offer to the participating centres and consequently, to the patients with complex diseases, who will ultimately benefit from this collaboration. One of the areas is the CPMS (more about this below).

4. How should patients proceed to access virtual consultations with European medical experts via ERN-RITA?

The best is if they approach their doctor. As of now, only doctors can refer patients to the CPMS, which is the virtual consultation system. The doctor uploads the patient’s data in an anonymised manner. If the doctor wants to get in touch with ERN-RITA, the easiest way to do it is through the contact form on the ERN-RITA website: https://ern-rita.org/cpms/

5. To conclude, do you have any message to share with the HAE Junior patient community in the Czech Republic? We are glad to count on the knowledge and experience of Camelia Isaic, Chairwoman of the HAE Junior association. She has been a great addition to RIPAG. The HAE patient community will be very well represented with her participation. 

Malena Vetterli is ERN RITA Board Member, patient representative for Autoinflammatory DiseasesExecutive Director for the FMF&AID Global Association, an international umbrella organization. She is also an EUPATI Fellow (EU-certified patient expert).