全球社群共慶世界血友病日
Global community marks World Hemophilia Day
每年的4月17日，全世界都會團結起來紀念「世界血友病日」，這是一個旨在提升大眾對血友病及其他遺傳性出血疾病認知的一年一度活動。
On April 17th, the world unites for World Hemophilia Day, an annual event dedicated to raising awareness for hemophilia and other inherited bleeding disorders.
該節日由世界血友病聯盟於1989年創立，選定此日期是為了向創始人法蘭克·施納貝爾致敬，他曾設想讓所有受這些疾病影響的人都能獲得普及的照護。
Established in 1989 by the World Federation of Hemophilia (WFH), this date honors founder Frank Schnabel, who envisioned universal access to care for those affected by these conditions.
血友病是一種罕見的遺傳性疾病，會影響血液的凝固能力，全球有超過110萬人受此影響。
Hemophilia, a rare genetic disorder affecting the blood's ability to clot, impacts over 1.1 million people globally.
儘管醫療進步已將這種曾經致命的疾病轉變為可控的狀況，但仍存在著巨大的挑戰。
Despite advancements that have turned this once-fatal condition into a manageable one, significant challenges remain.
2026年的活動主題為「診斷：照護的第一步」，強調了一個關鍵的「診斷缺口」，即超過75%的患者尚未獲得診斷與治療。
The 2026 campaign, 'Diagnosis: First Step to Care,' highlights a critical 'diagnosis gap,' where over 75% of individuals remain undiagnosed and untreated.
目前的努力重點在於改善醫療專業人員的培訓、加強診斷基礎設施，並確保所有人都能享有醫療公平，這也包含歷史上較易被忽略診斷的群體，如女性與女童。
Efforts are focused on improving healthcare professional training, strengthening diagnostic infrastructure, and ensuring health equity for all, including historically underdiagnosed groups like women and girls.
在這一天，世界各地的城市會透過點亮地標來「點亮紅光」，以展現團結。
On this day, cities 'Light It Up Red' by illuminating landmarks to show solidarity.
這不僅是對醫療進步的慶祝，更是一項急迫的行動號召。
It is both a celebration of progress and an urgent call to action.
透過分享故事與倡導政策變革，全球社群正朝著世界血友病聯盟的願景——「人人享有治療」——邁進，確保每個人都能獲得他們應得且救命的照護。
By sharing stories and advocating for policy changes, the global community strives toward the WFH vision of 'Treatment for All,' ensuring everyone receives the life-saving care they deserve.
