Combating Crigler Najjar's Disease: 1st Annual Progress Meeting of CureCN in Riccione, Italy

The CureCN consortium met for its 1st Annual Progress Meeting from March 22-23, 2019 in Riccione, a coastal destination located in the heart of the Eastern Riviera. The meeting took place adjacent to the annual meeting of Italian’s Crigler-Najjar patient organisation CiamiOnlus.

The meeting started with welcome and introduction notes by Prof. Federico Mingozzi, coordinator of the CureCN project, followed by a status update of each work package. Recent developments in the project, the overall progress as well as ideas and future activities were discussed. Besides a presentation on dissemination activities held by the patient organisations, project management issues and an internal exploitation session led by Eurice were topics on the agenda.

The afternoon was primarily dedicated to parallel group sessions where partners had the opportunity to talk about specific project tasks, and to plan the project activities for the coming months. The CureCN project welcomed two members of the Scientific and Ethics Advisory Board: Prof. Renzo Pegoraro, Scientific Director for Clinical Ethics at the Fondazione Lanza (Padova, Italy) and Prof. Francesca Fallarino from University of Perugia (Italy), enriched the meeting with their expertise and by offering valuable advice to the consortium.

On the second day, most of the project partners also attended the CiamiOnlus Annual Meeting, which was a great possibility for patients and their families as well as researchers, clinicians and doctors, to share experiences about the ultra-rare disease.

The meeting was rounded off with a joint dinner and a trip to the nearby city of Ravenna, which is known for its well-preserved late Roman and Byzantine architecture, with fantastic historical buildings and several UNESCO World Heritage Sites.