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.
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.
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.
Understanding the IgAN Journey
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.
Join Us for the IgAN Awareness Day Town Hall
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.
Why IgAN Awareness Matters
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.
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.
NephCure thanks our generous sponsors, Travere Therapeutics, Calliditas Therapeutics, Novartis, and Alexion for supporting this event and making IgAN Awareness Day possible.
For more information about IgAN Awareness Day, to register for the town hall, or to download the IgAN Patient Handbook, visit NephCure.org.
About 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.
CONTACT:
Kylie Karley
kkarley@nephcure.org
SOURCE NephCure
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