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World Hemophilia Day 2024"Equitable Access for All: Recognizing All Bleeding Disorders"

World Hemophilia Day 2024"Equitable Access for All: Recognizing All Bleeding Disorders"

2024 年世界血友病日 “人人享有平等機會:識別所有出血性疾病”
PR Newswire ·  04/17 12:01

MONTREAL, April 17, 2024 /PRNewswire/ - On April 17, 2024, the global bleeding disorders community will come together to celebrate World Hemophilia Day. The theme of the event this year is "Equitable access for all: recognizing all bleeding disorders". The World Federation of Hemophilia (WFH) vision of Treatment for All is for a world where all people with inherited bleeding disorders have access to care, regardless of their type of bleeding disorder, gender, age, or where they live. This April, let's celebrate our community and continue working towards a world where everyone—with hemophilia A or B, von Willebrand disease (VWD) or any other bleeding disorder—has access to diagnosis, treatment, and comprehensive care.

蒙特利爾,2024年4月17日 /PRNewswire/-2024年4月17日,全球出血性疾病界將齊聚一堂,慶祝世界血友病日。今年活動的主題是 “人人享有平等機會:識別所有出血性疾病”。世界血友病聯合會(WFH)的全民治療願景是建立一個所有遺傳性出血性疾病患者都能獲得治療的世界,無論其出血性疾病類型、性別、年齡或居住地如何。今年四月,讓我們慶祝我們的社區,繼續努力建設一個所有患有甲型或乙型血友病、血友病(VWD)或任何其他出血性疾病的人都能獲得診斷、治療和全面護理的世界。

"At one time, when one said, 'bleeding disorder', people heard 'male with hemophilia'. In the last few years, the world has started seeing that a bleeding disorder means much more. It's hemophilia A and B, von Willebrand disease (VWD), and other conditions. It's men, boys, women and girls. It's the parents and the friends who support the person with a bleeding disorder. In short, 'bleeding disorder' means community—a community that deserves recognition, and one that needs our support. Please join us on April 17 to show the world that you care about equitable access for all."
—Cesar Garrido, WFH President

“有一次,當人們說'出血性疾病'時,人們會聽到'男性血友病'的聲音。在過去的幾年中,世界已經開始看到出血性疾病的意義遠不止於此。這是血友病 A 和 B、血友病(VWD)和其他疾病。是男人、男孩、女人和女孩。支持出血性疾病患者的是父母和朋友。簡而言之,“出血性疾病” 意味着社區——一個值得認可、需要我們支持的社區。請在4月17日加入我們,向世界表明您關心所有人的平等機會。”
— WFH 總裁塞薩爾·加里多

There are many ways you can bring attention to hemophilia and other inherited bleeding disorders in your local and global community to raise awareness of the need for inclusion in national policy. Whether you are a person with a bleeding disorder, a national member organization (NMO), or a healthcare professional, here are just a few things you can do to get started:

您可以通過多種方式引起當地和全球社區對血友病和其他遺傳性出血性疾病的關注,以提高人們對將血友病和其他遺傳性出血性納入國家政策的必要性的認識。無論你是出血性疾病患者、國家成員組織 (NMO) 還是醫療保健專業人員,以下是你可以做的幾件事來開始:

  • Contact your NMO to find out how you and other NMO members can work together on World Hemophilia Day
  • Participate in the World Hemophilia Day Light it Up Red! campaign. Last year, thousands of people worldwide showed their support by lighting up over 150 landmarks red in cities across the world
  • Advocate locally using WFH World Hemophilia Day materials—including our letter template—and educate elected officials and health ministers
  • Support our global advocacy efforts and be a part of what we are building today for future generations by donating here
  • Share your story about how your quality of life—or the quality of life of someone you know—has changed thanks to receiving home-based treatment or prophylactic treatment on wfh.org/whd
  • Get social by posting about inherited bleeding disorders on Facebook, Twitter and LinkedIn using the #WorldHemophiliaDay, #WHD2024, and #LightItUpRed hashtags
  • Download resources like posters and social media banners from wfh.org/whd to help build your World Hemophilia Day Campaign
  • Organize a community event, webinar, forum, or town hall and invite elected officials to learn more about your work first-hand and to meet with the community
  • Take action locally and use WFH World Hemophilia Day materials to send a letter to your local policymakers, set up meetings with elected officials and health ministers and engage with the local media
  • Send pictures, comments, or questions to the WFH at [email protected]
  • 聯繫我們 你的 NMO 來了解你和其他 NMO 成員在世界血友病日如何合作
  • 參加 在世界血友病日把它點亮成紅色!競選活動。去年,全球成千上萬的人通過點亮世界各地城市的150多個地標來表示支持
  • 倡導者 在當地使用 WFH 世界血友病日材料(包括我們的信函模板)對民選官員和衛生部長進行教育
  • 支持 我們的全球宣傳工作,通過在這裏捐款,成爲我們今天爲子孫後代建設的目標的一部分
  • 分享 你的故事講述了由於在 wfh.org/whd 上接受家庭治療或預防性治療,你的生活質量(或你認識的人的生活質量)發生了怎樣的變化
  • 開始社交 使用 #WorldHemophiliaDay、#WHD2024 和 #LightItUpRed 主題標籤在 Facebook、Twitter 和 LinkedIn 上發佈有關遺傳性出血性疾病的信息
  • 下載 來自 wfh.org/whd 的海報和社交媒體橫幅等資源可幫助你開展世界血友病日活動
  • 整理 社區活動、網絡研討會、論壇或市政廳,邀請民選官員親自了解您的工作並與社區會面
  • 在本地採取行動 並使用WFH世界血友病日的材料致函當地的政策制定者,安排與民選官員和衛生部長的會議,並與當地媒體互動
  • 發送 通過 [email protected] 向 WFH 發送圖片、評論或問題

To learn more about World Hemophilia Day, please visit wfh.org/world-hemophilia-day.

要了解有關世界血友病日的更多信息,請訪問 wfh.org/world-hemophilia-day。

The WFH would like to thank our 2024 World Hemophilia Day sponsors for their continued support: Bayer, BioMarin Pharmaceutical Inc., Biotest, CSL Behring, F. Hoffman-La Roche Ltd., GC Pharma, Grifols, Kedrion, LFB S.A, Novo Nordisk, Octapharma, Pfizer, Sanofi, Sobi, Spark Therapeutics, and Takeda.

WFH要感謝我們的2024年世界血友病日贊助商的持續支持:拜耳、BioMarin製藥公司、Biotest、CSL Behring、F. Hoffman-La Roche有限公司、GC Pharma、Grifols、Kedrion、LFB S.A、諾和諾德、Octapharma、輝瑞、賽諾菲、Sobi、Spark Therapeutics和武田。

About bleeding disorders
關於出血性疾病

In people with bleeding disorders such as hemophilia A or B, or von Willebrand disease (VWD), the blood clotting process doesn't work properly, with the result that they can bleed for longer than normal, and some people may experience spontaneous bleeding into joints, muscles, or other parts of their bodies which can lead to developmental and permanent mobility issues.

在患有A型或B型血友病或血友病(VWD)等出血性疾病的人群中,血液凝固過程無法正常運作,結果他們出血的時間可能比平時長,有些人可能會出現關節、肌肉或身體其他部位的自發性出血,這可能導致發育和永久性行動不便。

About the World Federation of Hemophilia
關於世界血友病聯合會

The World Federation of Hemophilia (WFH) is a non-profit organization dedicated to improving and sustaining care for people with inherited bleeding disorders around the world. We work in partnership with healthcare providers (HCPs), governments, and our global network of national member organizations (NMOs) in 147 countries. We provide our NMOs and healthcare providers with the knowledge and tools they need to identify, support and treat people living with bleeding disorders in their communities, while promoting global advocacy and collaboration to achieve our common goals.

世界血友病聯合會(WFH)是一家非營利組織,致力於改善和維持對世界各地遺傳性出血性疾病患者的護理。我們與醫療保健提供商 (HCP)、政府以及遍佈147個國家的全球國家成員組織 (NMO) 網絡合作。我們爲我們的NMO和醫療保健提供者提供他們所需的知識和工具,以識別、支持和治療社區中的出血性疾病患者,同時促進全球宣傳與合作,以實現我們的共同目標。

Our vision of Treatment for All is for a world where all people with inherited bleeding disorders have access to care, regardless of their type of bleeding disorder, gender, age, or where they live. Our mission is to improve and sustain care for people with inherited bleeding disorders around the world.

我們對全民治療的願景是建設一個所有遺傳性出血性疾病患者都能獲得醫療的世界,無論他們的出血性疾病類型、性別、年齡或居住地如何。我們的使命是改善和維持對世界各地遺傳性出血性疾病患者的護理。

To find out more about the WFH, please visit .

要了解有關 WFH 的更多信息,請訪問 。

SOURCE World Federation of Hemophilia

來源:世界血友病聯合會

譯文內容由第三人軟體翻譯。


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