Crigler-Najjar Syndrome and CureCN project present at the Conférence de presse Téléthon 2018
Each year, at the eve of the Téléthon, the AFM-Téléthon invites different media representatives in order to communicate about the latest progress in the fields of research they are involved in or sponsoring. This year, AFM-Téléthon decided to focus on 4 diseases in which researchers achieved notably good results: Spinal Amyotrophy, Beta-Talassemy, Myotubular Myopathy and Crigler-Najjar Syndrome.
Two representatives from the CureCN project, Dr Federico Mingozzi, Head of the Immunology and Liver Gene Therapy team at the laboratory Généthon and Marylène Beinat, President of the French Crigler-Najjar Patient Organisation have been invited to talk about their work in the field of the Crigler-Najjar Syndrome. This was a great opportunity to raise awareness on the ultra-rare disease. They talked about the CureCN project and all the hope it raises for the Crigler-Najjar community but also for other diseases that could be treated by gene therapy.
The journalists had a lot of questions and some cuts from the interviews have been broadcasted by different radio stations on the day of the Téléthon, and have also been used for a short video that has been released via AFM-Téléthon’s social media channels.