Information for Patients

CureCN – a Patient-Driven Initiative

As a patient-driven initiative, the CureCN consortium comprises all active Crigler-Najjar patient organisations in Europe: the French Crigler-Najjar Patient Association, the Italian Crigler-Najjar Patient Association CIAMI onlus, as well as the Dutch Najjar Foundation. All three associations have a long history of cross-country interactions and are actively involved in the CureCN project.

CureCN Goals for Patients

The main goal of CureCN is to provide a curative gene therapy for patients suffering from Crigler-Najjar (CN) Syndrome. The consortium will carry out a clinical trial to verify the safety and efficacy of the therapy. This new curative option holds the potential to considerably improve the quality of life of CN patients by offering them a valid therapeutic alternative. The long-term objective of CureCN is to make the treatment accessible for all people living with CN.

Another central aim is to establish the first global Crigler-Najjar patient register. The register will be created to compile data on the natural course of the disease to be able to compare existing treatment modalities and strategies. If needed, the register could also help to identify additional clinical trial sites. Moreover, it can help to identify patients with a good prognosis for gene therapy. The Patients Associations of France, the Netherlands, and Italy have been supporting the activities of the CureCN network by providing critical input to the clinical trial design and efficacy endpoint definition, and by ensuring a direct link to the CN patients. They will remain an important partner throughout the project’s lifetime in every aspect of patient involvement.

Further information about the World Registry can be found here.

Point of Contact for Patients

You are a patient, family member or a friend of a person living with CN? Please contact our patient organisations in France, Italy and the Netherlands for any further advice and support.

Contacter l’association en France

Vous êtes patient, membre de la famille ou un ami du patient ? Veuillez contacter l’Association Française de Crigler-Najjar pour plus d’informations sur la maladie Crigler-Najjar.

Association Française de Crigler-Najjar
Marylène BEINAT

Contatta la nostra associazione in Italia

Sei un paziente, un familiare o un amico di una persona affetta dalla sindrome di Crigler-Najjar? Contatta la nostra associazione di pazienti in Italia e richiedi la nostra consulenza e/o il nostro supporto.

CIAMI onlus
Anna Cavallari

De Crigler Najjar Stichting

Ben je patient, gezinslid of een vriend van een persoon die leeft met CN? Neem dan a.ub. contact op met onze patientenorganisatie in Nederland voor verder advies en steun.

De Crigler Najjar Stichting
Jack Janssen