Both healthcare professionals and patient representatives strive for faster pathways to diagnosis, treatments, and enhanced quality of life for those living with rare immunological disorders. To make progress towards this shared goal, enhanced collaboration of both groups is key. The ERN-RITA network represents the most suitable European platform for such collaboration.
In November 2021, ERN-RITA held a workshop for the new affiliated partners, in Prague. The event’s agenda also included a session dedicated to Patient involvement in ERN-RITA, that was delivered by Camelia Isaic (MBA, CFA), a member of the RIPAG Council and chairwoman of HAE Junior patient organization from the Czech Republic.
The presentation provided an introduction on what RIPAG is (the RITA patient advisory group), how it works, current structure and representation by stream and workgroups. Participating healthcare professionals were also encouraged to seek and increase patient representatives’ involvement in their ongoing and future projects as part of ERN-RITA.
“Patient representatives can greatly contribute with valuable insights for research and guideline development projects, offer a better understanding of the disease from a patient perspective, help align patient and physician priorities”, Camelia commented during her presentation. She also provided several interesting examples of fruitful collaboration between the HAE Junior patient organization and international medical experts by referring to their own activities, such as:
- patient surveys on disease burden, patient priorities and living with HAE during the COVID-19 pandemic prepared with the support of the Department of Immunology, Second Faculty of Medicine, Charles University and Motol University Hospital in Prague (also a member of ERN-RITA since 2022)
- poster session participation as part of the 12th C1-inhibitor Deficiency & Angioedema Workshop organized by the Hungarian Angioedema Center of Reference and Excellence at the Semmelweis University in Budapest (also a member of ERN-RITA since 2022).
The participating healthcare professionals were also encouraged to recommend RIPAG to patient organizations from their own countries. National patient organizations representing rare immunological disorders can apply for RIPAG Council membership by submitting the required documentation for the attention of Malena Vetterli at firstname.lastname@example.org.