The Crigler-Najjar Patient Organisations in France, Italy and the Netherlands have joined forces to support the project CureCN as one consortium partner. With their knowledge of the disease, they emphasise the patients’ perspective and will inform about the progress in the project. They will be strongly involved in the ethical oversight of the clinical trial performed in CureCN and will be deeply involved in disseminating the results of the project, particularly by preparing information material for patients and non-scientists.
Founded in 2003, the French Crigler-Najjar Patient Association (AFCN) is the only national charity in France focused on Crigler-Najjar syndrome (CN) care and advocacy. Its mission is to raise awareness on CN and to improve the treatment and quality of life for patients. In this context, AFCN contributed to the development of a fiber optic phototherapy device, which is now being tested in a clinical trial. AFCN has established a strong connection to the Reference Centre for Inherited Hepatic Metabolic Disease.
Since 1996, the Italian Crigler-Najjar Patient Association (CIAMI onlus) has been raising awareness of the disease aiming to foster research to find curing treatments against Crigler-Najjar. In this context, CIAMI has sponsored research projects to develop innovative portable phototherapy devices with LEDs technology. The association also works together with the national and local health services to assure the same assistance to all patients. The association boasts an important collaboration with the Military Pharmaceutical Lab in Florence (Stabilimento Chimico Farmaceutico Militare) where an orphan drug named colestiramin to lower bilirubin is developed exclusively for CN patients.
Established in 1988, the Dutch Najjar Foundation (DNF) has the mission to improve welfare and treatment opportunities for patients with Crigler-Najjar. In this context, the DNF very actively raises funds to support the patients and their families and to finance the development of novel therapies and more effective phototherapy devices.
Over the years, the patient organisation has become a key communicator for information on CN and is constantly connecting CN patients and researchers specialised on the disease.