In the session on medication, Tan, who had just participated in a gene therapy clinical trial, was invited to share his gene therapy experience and feelings. His testimonial brought new hope to everyone and enhanced everyone ‘s confidence in overcoming the disease.
In the session called ‘Good Life’, Ye Jiahao shared the difficulties and challenges encountered in the process of seeking medical advice over the years after his diagnosis in 2015, as well as how he was prepared to give up and how he was feeling desperate. He changed his mindset step by step and finally received ERT treatment through his own efforts and unremitting persistence. He started having a positive outlook on life again with the support and encouragement of the patient association.
Adequate communication makes everyone realize that only by taking the initiative to change, adjusting your mindset and actively facing the disease, you can find the answers you need to face this journey, chase your dreams and to not let the disease define your live.
During the afternoon, Huang Zhenhui, president of Fabry Patient Association, welcomed all guests, patients and friends from all walks of life to the meeting during his opening speech. He mentioned that he truly hopes that everyone will work together to achieve a better tomorrow.