Note: this story was originally published by HAE Junior, a Patient Worthy partner
Interview with Malena Vetterli from the European Reference Network (ERN-RITA) for rare immunodeficiencies, autoinflammatory and autoimmune diseases.
1. Malena, could you please briefly introduce our readers to ERN-RITA and its RIPAG Patient Council?
ERNs (European Reference Networks) are virtual networks bringing together healthcare providers across Europe to facilitate the discussion of complex or rare diseases that require highly specialized treatment and to gather knowledge and resources. ERN-RITA is an acronym for rare immunodeficiency, autoinflammatory, and autoimmune diseases. RIPAG works to represent patients within ERN-RITA. It has four components: primary immunodeficiency, autoinflammatory diseases, autoimmune diseases, and pediatric rheumatology.
2. How does RIPAG ensure that the interests and priorities of patients and health professionals are consistent within ERN-RITA activities?
Patient representatives are actively and equally involved in all activities. We achieve this through the RIPAG, as well as by assigning one patient representative to each of the four disease sectors within the RITA Council, together with healthcare professionals.
3. As of January 2022, ERN-RITA in the Czech Republic has two full members – these are specialized workplaces in the General University Hospital and the University Hospital in Motol in Prague. What benefits can Czech patients expect from this connection at the European level?
Membership brings the knowledge and information that ERN-RITA can provide to the participating workplaces and thus to patients with complex diseases, which will ultimately benefit from this cooperation. Another separate area is the CPMS (more below).
4 . How should patients proceed to gain access to virtual consultations with European medical professionals through ERN-RITA?
It is best if you contact your doctor. Only doctors can now register patients in the CPMS, which is a virtual consulting system. The doctor will record the patient’s data in an anonymous mode. If the doctor wants to contact ERN-RITA, the easiest way is via the contact form on the ERN-RITA website .
5. Finally, do you have a message that you would like to pass on to the HAE Junior patient community in the Czech Republic?
We are pleased that we can also rely on the knowledge and experience of Camelia Isaic, Chair of HAE Junior, which has perfectly complemented our ranks at RIPAG. Thanks to its participation, the community of patients with HAE will be very well represented.
Malena Vetterli is a member of the ERN-RITA board, where she represents patients with autoinflammatory diseases, and at the same time the executive director of the international organization FMF AID Global association. She also works as a certified expert – EUPATI Fellow.
Check out the original story publication here.
