The Italian perspective - Series of interviews about CN
A series of articles about the Crigler Najjar syndrome was published in the Italian OMAR Osservatorio Malattierare. They highlight different aspects related to the disease and the CureCN project:
• The new clinical trial starting in Italy
Two clinical centers in Italy, in Bergamo (CureCN partner AOPG) and Naples (CureCN partner FEDII), will be involved in the clinical trial which is part of the CureCN project. Lorenzo D'Antiga, director of the pediatrics department at AOPG, explains the disease, its current treatment and shortcomings and the new clinical trial involving gene therapy. The complete article is available here.
• Life with the disease
Gaia Groppi, a 26 year old woman, gives insight into her life with the disease. Except for the daily phototherapy, she lives the normal life of a young woman in Italy. But, of course, the Crigler-Najjar syndrome and the obligation to sleep under ultraviolet light every night, is a burden. Accordingly, the new clinical trial raises high hopes whether she herself may participate or not. If you want to read more about Gaia, the complete article is available here.
• Support of patients by CIAMI Onlus
Velio Venturi, father of a girl with Crigler Najjar syndrome, is the founder and President of CIAMI Onlus, the Italian Crigler-Najjar patient organization. He and Rossana Groppi, Vice President of CIAMI Onlus, explain the importance of patient organisations especially for rare diseases. As the disease affects one in a million people, there are only about 50-60 patients in Italy. CIAMI helps to raise awareness about the disease, brings patients and their families together on an annual basis and particularly supports patients and their families in the trial that is soon to start in Naples and Bergamo. The complete article is available here.
Although the articles are in Italian, they are also available in English, French and Spanish. Scroll down to the bottom of each page and click on the respective flag to see the translation.