ROCKVILLE, Md., June 13, 2024 (GLOBE NEWSWIRE) -- The American Kidney Fund (AKF) is proud to announce the launch of the Rare Kidney Disease Action Network (RKDAN), a new effort that will play a vital role in ensuring that the voices of people fighting rare kidney diseases are heard and amplified. The RKDAN’s newly formed and growing roster includes more than 60 people with rare kidney diseases who will work with AKF to effectively advocate on behalf of the rare kidney disease community for policies and regulations at both the state and federal level.

罗克维尔，马里兰州，2024年6月13日（环球通讯社）--美国肾脏基金会（AKF）骄傲地宣布启动罕见肾脏疾病行动网络（RKDAN），这项新的努力将在确保人们对抗罕见肾脏疾病的声音被听到和放大方面发挥重要作用。RKDAN新成立且不断增长的名册包括60多名罕见肾脏疾病患者，他们将与AKF合作，代表罕见肾脏疾病社区有效宣传州和联邦层面的政策和法规。

In addition to advocacy efforts, AKF will develop new educational resources informed by the real-world experiences of RKDAN members. “Over the last six years, the American Kidney Fund has significantly expanded resources for people with rare kidney diseases, developing successful education and awareness initiatives dedicated to APOL1-mediated kidney disease (AMKD), atypical hemolytic uremic syndrome, cystinosis, primary hyperoxaluria type 1, IgA nephropathy (IgAN), and complement 3 glomerulopathy, among others, and we’ve worked to raise the profile of rare kidney disease on Capitol Hill and through state legislative advocacy efforts.

除了宣传工作外，AKF还将根据RKDAN成员的实际经验开发新的教育资源。“在过去的六年中，美国肾脏基金会大大扩大了对罕见肾脏疾病患者的资源，制定了成功的教育和宣传计划，致力于APOL1介导的肾脏疾病（AMKD），非典型溶血性尿毒症综合征，胱氨酸病，原发性高草酸尿症1型，IgA肾病（IgAN）和补体3肾小球病等，我们一直致力于提高国会山罕见肾脏疾病的知名度，并通过州立法宣传工作。

Most recently we hosted the first annual AMKD National Awareness Day to increase recognition of this rapidly progressive genetic form of kidney disease.” said AKF President and CEO LaVarne Burton. “We’ve also led efforts to bring together stakeholders on this issue through our Unknown Causes of Kidney Disease Project.

最近，我们举办了首届年度AMKD国家意识日，以提高人们对这种快速进展的肾脏疾病遗传形式的认识。”AKF总裁兼首席执行官拉瓦恩·伯顿（LavarneBurton）表示。“我们还通过我们的肾脏疾病未知原因项目，牵头将利益相关者聚集在一起。

The creation of the Rare Kidney Disease Action Network is an important next step to work with and mobilize patient advocates whose powerful stories can make an impact on policymakers.” In this first year, the RKDAN will focus heavily on issues faced by people living with IgAN, a.

创建罕见肾脏疾病行动网络是与患者倡导者合作并动员他们的有力故事可以对决策者产生影响的重要下一步。”在第一年，RKDAN将重点关注IgAN患者面临的问题。