【Cubic Zine 2024年2月號】從初創中進化 陪伴弱勢病患對抗死神 -- 遺傳病學者陳浩然30年堅持科研路 研AI溝通工具 破解罕見病無聲苦難

「罕見病病人他們沒有選擇，不能揀何時發病、何時病好。」每年二月最後一日，是由歐洲罕見疾病組織（EURORDIS）發起的「國際世界罕見疾病日（Rare Disease Day）」。
一生專注研究神經系統性疾病的中大生命科學學院教授陳浩然（Edwin），他的研究成就非凡，從劍橋大學獲取博士學位，及後帶領團隊成功解開小腦萎縮症成因。在兩小時訪談中，Edwin 談起令人遺憾的「社會現實」：罕病製藥成本高，資源匱乏，罕病家庭往往在絕望中與死神拔河。
當最親密的家人，成為最沉重的負擔，你會如何面對？Edwin曾家訪要求安樂死的病人，觸動他由科學家成為社創領袖，連結各科學生，開展「Voice Link」計劃。讓我們聽聽這位文質彬彬、謙虛有禮的科學家，如何在看重成本效益的香港，突破「科研空想」，堅定實踐理想。
今期內容包括：#罕見疾病 #AI留聲機 #初創科研 #跨院校合作
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【 CubicZine Issue30】Stand by Patients with Rare Diseases:
Geneticist-Cum-Entrepreneur Edwin Chan Persisting in Scientific Research for Over 30 Years, Developing AI Communication Tools to Decode the Unspoken Love among Silent Sufferers
“Rare disease patients have no choice; they cannot choose when to fall ill or when to recover.” The last day of February each year is designated as “Rare Disease Day” by the European Organisation for Rare Diseases (EURORDIS).
Edwin Chan, a Professor at the School of Life Sciences,The Chinese University of Hong Kong (CUHK), specializing in #neurological diseases, has dedicated his life to researching these rare conditions. With an impressive academic background, including a doctoral degree from the University of Cambridge, he has led a team that successfully uncovered the causes of spinocerebellar atrophy (#SCA) . During the two-hour interview, Edwin shared the unfortunate “social reality”: high costs and limited resources in rare disease pharmaceutical development often leave families battling with despair against death.
When closest family members become the heaviest burden, how do you face it? Edwin’s transformation from a scientist to a social innovation leader was inspired by visiting a patient who requested euthanasia, leading him to establish the “#VoiceLink” program, connecting students from various disciplines. Let us listen to this humble and courteous scientist and learn how he breaks through the barriers of “scientific idealism” in cost-conscious Hong Kong to steadfastly pursue his ideals.
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#CUHK #中大 #創業創新 #Innovation #Entreprenuership #知識轉移 #ORKTS #CUHKInnoPort #創博館