你是否曾想過,一個人可以如何點燃全球的希望之光?🌿 Frank Schnabel,一位血友病患者,也是一位勇敢的倡議者,他用自己微弱卻熾熱的生命之火,點燃了「世界血友病日」的誕生。1963年,他成立了世界血友病聯盟(World Federation of Hemophilia, WFH),在當時醫療資源極度匱乏的年代,這如同在沙漠中種下一棵堅韌的小樹,為無數患者帶來庇蔭。
Srivastava, A., Santagostino, E., Dougall, A., et al. (2020). WFH guidelines for the management of hemophilia, 3rd edition. Haemophilia, 26(S6), 1-158. DOI:10.1111/hae.14046
Skinner, M. W. (2021). WFH: Closing the Gap: Achieving Treatment for All. Haemophilia, 27(Suppl 2), 43–49. DOI:10.1111/hae.14301
Iorio, A., Skinner, M. W., et al. (2022). Global survey on hemophilia care: Closing the gaps. Haemophilia, 28(5), 703–710. DOI:10.1111/hae.14531
Hootsuite Social Trends Report (2023). Health Awareness Campaigns on Social Media. Accessed via Open Access.
回覆: 根據2020年世界血友病聯盟的報告,全球仍有超過70%的血友病患者無法獲得適當治療(註1)。而且在許多低收入國家,基本的凝血因子治療仍然稀缺。這也是為何【世界血友病日】存在的重要性——讓更多人看見、了解並推動資源分配。 (註1:Srivastava A, et al. 2020, WFH guidelines for the management of hemophilia)
問題5:參與世界血友病日活動有什麼實際意義?
回覆: 參與活動,不只是象徵性的支持,而是實際地傳遞關心與聲量。根據2022年全球調查,活動參與者對血友病的認知提升約70%,患者社群也因此建立更強的支持網絡(註2)。每一份參與,就像在微光中點燃新的火苗,讓世界變得更加溫暖而堅定。🌸 (註2:Iorio A, et al. 2022, Global survey on hemophilia care)
▲《勇者之巔 Path of the Brave》打造全台最燃體能賽!(圖/中華民國體育運動總會提供)
記者張辰卿/高雄報導
結合國際規格、全民參與與品牌能量的年度體能盛事《勇者之巔 Path of the Brave》極限體能挑戰賽,即將於114年8月30日(星期六)於高雄展覽館北館正式登場!此活動由中華民國體育運動總會主辦、高雄市政府運動發展局指導,更獲得運動營養領域兩大品牌「戰神MARS」與「康貝特®」贊助支持,強強聯手打造屬於台灣勇者的專屬競技舞台!
This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary cookies are absolutely essential for the website to function properly. These cookies ensure basic functionalities and security features of the website, anonymously.
Cookie
Duration
Description
cookielawinfo-checkbox-analytics
11 months
This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytics".
cookielawinfo-checkbox-functional
11 months
The cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Functional".
cookielawinfo-checkbox-necessary
11 months
This cookie is set by GDPR Cookie Consent plugin. The cookies is used to store the user consent for the cookies in the category "Necessary".
cookielawinfo-checkbox-others
11 months
This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Other.
cookielawinfo-checkbox-performance
11 months
This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance".
viewed_cookie_policy
11 months
The cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. It does not store any personal data.
Functional cookies help to perform certain functionalities like sharing the content of the website on social media platforms, collect feedbacks, and other third-party features.
Performance cookies are used to understand and analyze the key performance indexes of the website which helps in delivering a better user experience for the visitors.
Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.
Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.