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
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,费城 / PRNewswire - NephCure,一家致力于找到更好的治疗方案和治愈罕见肾脏疾病的领先非营利组织,自豪地宣布于2024年9月26日举办首届IgA肾病(IgAN)意识日。该活动专门致力于提高人们对IgA肾病的意识,这是一种罕见且常常“潜在”的肾脏疾病。
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.
这一天对IgAN社区来说是一个重要的里程碑,因为NephCure旨在将重点放在这种鲜为人知的状况上,宣扬早期诊断和积极治疗的重要性,并为受影响的人提供关键资源。
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,又称Berger氏病,是一种导致肾脏滤泡单位炎症的肾脏情况,可能导致肾脏损害甚至肾衰竭。多年来,IgAN一直是一位潜在的对手,由于缺乏可识别的症状而经常不为人察觉。然而,随着新的FDA批准的治疗期权的出现,IgAN的治疗格局正在发生变化,为患者带来希望,帮助保护肾功能,并可能延迟或预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.
与IgAN意识日同时,NephCure将推出名为“悄无声息但严重:了解IgA肾病”的强大数字广告活动。该活动将持续到11月,并将展示四名IgAN患者的动人故事,这些患者已经应对了这种状况的挑战,以及若干不同的教育资源和支持期权。
Join Us for the IgAN Awareness Day Town Hall
加入我们参加IgAN意识日市政厅
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.
作为9月26日意识日活动的一部分,NephCure将于晚上7:30在EDT举办免费的虚拟IgAN意识日市政厅。这一富有洞察力和鼓舞人心的活动将汇集患者、看护人和医疗专业人员,讨论IgAN治疗的最新进展,分享患者证言,并提供有关新推出的IgAN患者援助计划的信息。我们邀请所有受IgAN影响的人加入这一重要的交流。要注册网络研讨会,请点击此处。
Why IgAN Awareness Matters
为什么IgAN意识很重要
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肾病在早期阶段通常不易被发现,多达40%的患者在诊断时没有明显的症状。尽管其进展缓慢,但对于治疗IgAN也存在着越来越迫切的需求,因为即使尿液中蛋白质的水平较低(蛋白尿),患者仍有发展为末期肾病(ESKD)的风险。NephCure致力于为患者提供所需的工具和资源,包括新发布的IgAN患者手册,其中提供了全面指南,帮助理解和管理该疾病。
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患者手册还提供了如何在日常生活中管理IgAN的实用建议,如有价值的饮食技巧,生活方式调整以及与医疗保健提供者进行有效沟通的策略。要下载此资源,请点击这里。
NephCure thanks our generous sponsors, Travere Therapeutics, Calliditas Therapeutics, Novartis, and Alexion for supporting this event and making IgAN Awareness Day possible.
NephCure感谢慷慨赞助商Travere Therapeutics、Calliditas Therapeutics、Novartis和Alexion对本次活动的支持,使IgAN意识日成为可能。
For more information about IgAN Awareness Day, to register for the town hall, or to download the IgAN Patient Handbook, visit NephCure.org.
要了解更多关于IgAN意识日的信息,注册参加市政厅会议或下载IgAN患者手册,请访问NephCure.org。
About NephCure:
关于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的使命是赋予罕见的蛋白质泄漏性肾脏疾病患者掌握健康的能力,同时引领研究、新治疗和护理的革命。NephCure成立于2000年,由一群致力于患者的父母组成,已经投入超过4000万美元进行肾脏疾病研究,并帮助建立了一个现在有新的治疗方法和60多项干预性药物试验的肾脏疾病研究领域。NephCure是一家美国免税501(c)(3)公益组织。
CONTACT:
Kylie Karley
[email protected]
联系人:
Kylie Karley
[email protected]
SOURCE NephCure
来源 NephCure