Interview of a CN patient at event on Advanced Medical Therapies
An event on advanced medical therapies “How we will heal in 2029” was held from November 21-24, 2019 at the Science and Technology Museum “Leonardo da Vinci” in Milan, Italy. A very detailed and comprehensive video about gene therapy was shown on a huge 360° screen in a special booth. The animation showed the “journey” of the therapeutic gene towards the cells. This video has been produced by an Italian website of scientific information and dissemination on advanced therapies “Osservatorio Terapie Avanzate” in collaboration with the Italian Telethon Foundation.
Gaia Groppi, an Italian Crigler Najjar patient, visited the event mainly to watch this impressive video. When the event staff asked her about her interest in the video, she started talking about being affected from the Crigler-Najjar syndrome and about the EU project CureCN. They became curious and wanted to know more about the CureCN project and its activities so that she showed them the CureCN project video. Meeting a patient waiting for a gene therapy was the perfect opportunity for them to interview Gaia.
While she was explaining that patients don’t really know what happens in their body when talking to clinicians and researchers, she praised the video animation as a perfect, clear and easy to understand explanation of gene therapy which will help patients to better understand and accept the therapy.
Furthermore, she talked about the hopes and expectations of concerned patients, their desire of being free from the disease and at the same time the need to wait for any results from scientific research.