CureCN Project Video Released
The EU project CureCN aims to find a cure to the ultra-rare liver disease Crigler-Najjar syndrome
After its successful start at the beginning of 2018, our Horizon 2020 project CureCN has published a video to inform about its aims and activities. In the clip that has been realised during the kick-off event in Amsterdam, the researchers, patient organisations and a patient explain the importance of the project that aims at finding a curative gene therapy for the so far incurable Crigler-Najjar syndrome.
CureCN focuses on developing a curative gene therapy for the ultra-rare liver disease Crigler-Najjar syndrome (CN) and to make the treatment available to patients. The project is funded under the EU Framework Programme for Research and Innovation Horizon 2020 with a total budget of € 6.25 million.
Crigler-Najjar is a life-threatening liver disease that affects about one in a million individuals at birth. Currently, there is no curing treatment available apart from liver transplantation. The available treatment with phototherapy reduces the symptoms, but is very debilitating and loses its efficacy over time.
In addition to implementing a clinical trial, CureCN aims to establish the first global CN patient registry compiling data about the natural course of the disease and allowing a comparison of current treatments. As a patient-driven initiative, CureCN is supported by all active European patient associations, located in France, Italy and the Netherlands. As one of the 11 international partners from academia, hospitals, healthcare companies and patient organisations, Eurice supports CureCN in its project management and innovation-related activities including dissemination strategy and targeted communication measures.