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NephCure Announces First-Ever IgA Nephropathy (IgAN) Awareness Day on September 26, 2024

NephCure Announces First-Ever IgA Nephropathy (IgAN) Awareness Day on September 26, 2024

NephCure宣佈2024年9月26日舉辦首屆IgA腎病(IgAN)意識日
PR Newswire ·  09/03 08:00

PHILADELPHIA, Sept. 3, 2024 /PRNewswire/ -- NephCure, a leading nonprofit organization dedicated to finding better treatments and a cure for rare kidney disease, is proud to announce the inaugural IgA Nephropathy (IgAN) Awareness Day on September 26, 2024. The event is specifically dedicated to raising awareness about IgA nephropathy, a rare and often "silent" kidney disease.

2024年9月3日,費城 / PRNewswire - NephCure,一家致力於找到更好的治療方案和治癒罕見腎臟疾病的領先非營利組織,自豪地宣佈於2024年9月26日舉辦首屆IgA腎病(IgAN)意識日。該活動專門致力於提高人們對IgA腎病的意識,這是一種罕見且常常「潛在」的腎臟疾病。

This day marks a significant milestone for the IgAN community, as NephCure aims to shine a spotlight on this underrecognized condition, promote the importance of early diagnosis and proactive treatment, and provide crucial resources for those affected.

這一天對IgAN社區來說是一個重要的里程碑,因爲NephCure旨在將重點放在這種鮮爲人知的狀況上,宣揚早期診斷和積極治療的重要性,併爲受影響的人提供關鍵資源。

IgAN, also known as Berger's disease, is a kidney condition that causes inflammation in the kidney's filtering units, potentially leading to kidney damage and even kidney failure. For many years, IgAN has been a silent adversary, often progressing undetected due to a lack of recognizable symptoms. However, the landscape of IgAN treatment is changing, as new FDA-approved treatment options are now available, offering hope to patients by helping preserve kidney function and potentially delaying or preventing the need for dialysis or transplant.

IgAN,又稱Berger氏病,是一種導致腎臟濾泡單位炎症的腎臟情況,可能導致腎臟損害甚至腎衰竭。多年來,IgAN一直是一位潛在的對手,由於缺乏可識別的症狀而經常不爲人察覺。然而,隨着新的FDA批准的治療期權的出現,IgAN的治療格局正在發生變化,爲患者帶來希望,幫助保護腎功能,並可能延遲或預防透析或移植的需求。

Understanding the IgAN Journey

了解IgAN之旅

To coincide with IgAN Awareness Day, NephCure is launching a powerful digital advertising campaign titled " Silent but Serious: Understanding IgA Nephropathy ." This campaign will run through November and will feature compelling stories from four IgAN patients who have navigated the challenges of this condition, as well as several different educational resources and support options.

與IgAN意識日同時,NephCure將推出名爲「悄無聲息但嚴重:了解IgA腎病」的強大數字廣告活動。該活動將持續到11月,並將展示四名IgAN患者的動人故事,這些患者已經應對了這種狀況的挑戰,以及若干不同的教育資源和支持期權。

Join Us for the IgAN Awareness Day Town Hall

加入我們參加IgAN意識日市政廳

As part of the awareness day events on September 26th, NephCure will host a free, virtual IgAN Awareness Day Town Hall at 7:30 pm EDT. This insightful and empowering event will bring together patients, caregivers, and medical professionals to discuss the latest advancements in IgAN treatment, share patient testimonials, and provide information about the newly launched IgAN Patient Assistance Program. We invite everyone impacted by IgAN to join this important conversation. To register for the webinar, click here.

作爲9月26日意識日活動的一部分,NephCure將於晚上7:30在EDT舉辦免費的虛擬IgAN意識日市政廳。這一富有洞察力和鼓舞人心的活動將彙集患者、看護人和醫療專業人員,討論IgAN治療的最新進展,分享患者證言,並提供有關新推出的IgAN患者援助計劃的信息。我們邀請所有受IgAN影響的人加入這一重要的交流。要註冊網絡研討會,請點擊此處。

Why IgAN Awareness Matters

爲什麼IgAN意識很重要

IgA Nephropathy often goes undetected in its early stages, with up to 40% of patients showing no recognizable symptoms at the time of diagnosis. Despite its slow progression, there is a growing urgency to treat IgAN, as even patients with lower levels of protein in their urine (proteinuria) are at risk of progressing to end-stage kidney disease (ESKD). NephCure is dedicated to providing the tools and resources needed for patients to take charge of their health, including the newly released IgAN Patient Handbook, which offers a comprehensive guide to understanding and managing the disease.

IgA腎病在早期階段通常不易被發現,多達40%的患者在診斷時沒有明顯的症狀。儘管其進展緩慢,但對於治療IgAN也存在着越來越迫切的需求,因爲即使尿液中蛋白質的水平較低(蛋白尿),患者仍有發展爲末期腎病(ESKD)的風險。NephCure致力於爲患者提供所需的工具和資源,包括新發布的IgAN患者手冊,其中提供了全面指南,幫助理解和管理該疾病。

The IgAN Patient Handbook also provides practical advice on managing daily life with IgAN, such as valuable dietary tips, lifestyle adjustments, and effective communication strategies with healthcare providers. To download this resource, click here.

IgAN患者手冊還提供瞭如何在日常生活中管理IgAN的實用建議,如有價值的飲食技巧,生活方式調整以及與醫療保健提供者進行有效溝通的策略。要下載此資源,請點擊這裏。

NephCure thanks our generous sponsors, Travere Therapeutics, Calliditas Therapeutics, Novartis, and Alexion for supporting this event and making IgAN Awareness Day possible.

NephCure感謝慷慨贊助商Travere Therapeutics、Calliditas Therapeutics、Novartis和Alexion對本次活動的支持,使IgAN意識日成爲可能。

For more information about IgAN Awareness Day, to register for the town hall, or to download the IgAN Patient Handbook, visit NephCure.org.

要了解更多關於IgAN意識日的信息,註冊參加市政廳會議或下載IgAN患者手冊,請訪問NephCure.org。

About NephCure:

關於NephCure:

NephCure's mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.

NephCure的使命是賦予罕見的蛋白質泄漏性腎臟疾病患者掌握健康的能力,同時引領研究、新治療和護理的革命。NephCure成立於2000年,由一群致力於患者的父母組成,已經投入超過4000萬美元進行腎臟疾病研究,並幫助建立了一個現在有新的治療方法和60多項干預性藥物試驗的腎臟疾病研究領域。NephCure是一家美國免稅501(c)(3)公益組織。

CONTACT:
Kylie Karley
[email protected]

聯繫人:
Kylie Karley
[email protected]

SOURCE NephCure

來源 NephCure

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