CureCN at annual CiamiOnlus meeting in Italy
Dr Federico Mingozzi, coordinator of the European research project CureCN, has presented the innovative CureCN gene therapy approach at the annual meeting of Italian’s Crigler-Najjar patient organisation CiamiOnlus.
Riccione, April 14-15 2018 – This year’s annual meeting of the Italian Crigler-Najjar patient organisation CiamiOnlus focused on the European research project CureCN which has just started on January 1, 2018 and which aims at developing an innovative gene therapy for the Crigler-Najjar syndrome (CN).
In this context, Dr Mingozzi, the coordinator of CureCN, gave details about the upcoming clinical trial to test the safety and efficacy of the innovative AAV gene therapy. Furthermore, he answered questions of parents and patients and stressed the importance of the close collaboration with patient organisations. Finally, he explained the roles and tasks of the different partners in CureCN. As the new project could change the life of patients and their families, it gives a lot of hope. “We all left Riccione with hope in our hearts,” stated CiamiOnlus. “Hope in CureCN, hope for a good researchers’ work, hope to switch off the blue lights that light up the CN patients’ nights.”
CiamiOnlus meets once a year and organises a programme for patients and their families in Riccione, Italy. The get-together is a great possibility for patients – the younger and the older ones – to share experiences about their ultra-rare disease and to support each other. Each year, researchers, clinicians, doctors and experts are invited to talk about current news that can help improve the patients’ lives.