IgA Nephropathy

IgA nephropathy (IgAN), a rare kidney disorder, is considered the most prevalent primary chronic glomerular disease worldwide.

It is caused by deposits of immunoglobulin A (IgA) in the kidney and characterized by hematuria (blood in the urine), proteinuria, and variable rates of progressive renal failure. Other common symptoms of IgAN may include upper respiratory tract infection, GI or urinary infection, edema, and groin pain.

IgAN affects males two to three times more often than females and is believed to affect as many as 165,000 people in the United States. It is one of the leading causes of acute nephritis in young people in the United States, Europe and Japan.1

With this disease, there is often a slow progression toward chronic kidney failure. There are no approved treatments for IgAN. Patients are currently managed with angiotensin receptor blockers and angiotensin converting enzyme inhibitors, with immunosuppression generally reserved for IgAN patients with severe proteinuria or rapid progression of renal failure.

The following organizations may be a resource for information and support for people with IgAN and those around them:

NephCure Kidney International

NephCure Kidney International is an organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and the diseases that cause Nephrotic Syndrome, improve treatment, and find a cure.

Kidney & Urology Foundation of America

The Kidney & Urology Foundation of America (KUFA) is a national, 501 c(3) not-for-profit organization dedicated to helping people with kidney and urologic diseases and individuals waiting for organ and tissue transplants. The Kidney & Urology Foundation focuses on care and support of the patient, the concerns of those at risk, education for the community and medical professionals, methods of prevention, and improved treatment options.

Global Genes

Global Genes is a non-profit patient advocacy organization working to eliminate the challenges of rare disease by building awareness, educating the global community, and providing critical connections and resources that equip advocates to become activists for their disease.  Global Genes promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. Numerous tools, resources and educational events can be found on the Global Genes website www.globalgenes.org.

National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service. In the US, NORD is also the official sponsor of Rare Disease Day, an annual global observance that raises awareness of rare diseases and elevates them into the public consciousness as an important health issue that cannot be ignored.

EURORDIS

EURORDIS is a non-governmental patient-driven alliance of more than 700 rare disease patient organisations in more than 60 countries. EURORDIS strives to build a strong pan-European community of patient organisations and people living with a rare disease, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives. EURORDIS leads global efforts for Rare Disease Day and the online social platform for people living with or affected by a rare diseases RareConnect. EURORDIS represents the voice of an estimated 30 million people living with a rare disease in Europe. Follow @eurordis or see the EURORDIS Facebook page. For more information visit: www.eurordis.org.

 

  1. NORD https://rarediseases.org/rare-diseases/iga-nephropathy/