National Kidney Foundation and IGAN Foundation of America organizing meeting to hear voices of patients with this chronic kidney disease
New York, NY – August 16, 2019 – The many voices of patients with IgA nephropathy, a chronic kidney disease, will come together on Monday, August 19, during an Externally-led Patient-focused Drug Development (EL-PFDD) meeting in Hyattsville, MD.
The meeting is organized by the National Kidney Foundation (NKF) & IGA Nephropathy Foundation of America (IGANF) and is free to participants. Patients with IgA nephropathy and their caregivers will have the opportunity at the all-day session to share their disease experience with the U.S. Food and Drug Administration (FDA), pharmaceutical companies interested in developing drugs for the disease, doctors and researchers who are experts in the disease, and other stakeholders.
IgAN (Immunoglobulin A nephropathy), formerly known as Berger’s disease, damages the glomeruli (filters) inside the kidneys. The causes of IgAN are not well understood. IgAN is an autoimmune disease where the body makes antibodies against its own IgA, itself an antibody. Over time, some patients with IgAN slowly get worse until they reach kidney failure. If this occurs, patients need a kidney transplant or dialysis to stay alive.
At this meeting, patients will tell the FDA what IgAN symptoms matter most to them and what is important to them in new therapeutics for the disease.
The meeting will be co-chaired by Dr. Bruce Julian of the University of Alabama at Birmingham and Dr. Pietro Canetta of Columbia University. The day will include remarks by representatives from the FDA. The highlights of the meeting will be testimonies by 10 patient panelists and several moderated discussions with the patient and caregiver audience.
The meeting will be from 9 a.m. to about 3:30 p.m. at the College Park Marriott Hotel & Conference Center in Hyattsville.
EL-PFDD meetings are vital in developing new drugs for diseases that have inadequate treatments. Understanding the patient perspective informs the FDA on what matters to patients and whether potential new drugs will address these needs.
After the meeting, NKF and IGANF will write a meeting report called the “Voice of the Patient” report. This will be sent to the FDA and will be used to help in their decisions on whether to approve potential new treatments for IgAN.
Patients, care partners, and other stakeholders are invited to attend via webinar. To join the meeting live, register here.
The “Voice of the Patient” report will also be posted on NKF’s website.
For more information, visit https://www.kidney.org/events/local-event/nkf-and-igan-pfdd-iga-nephropathy.
Kidney Disease Facts
In the United States, 37 million adults are estimated to have chronic kidney disease (CKD) – and most aren’t aware of it. 1 in 3 American adults is at risk for CKD. Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity, a family history of kidney failure, and being age 60 or older. People of African American, Hispanic, Native American, Asian or Pacific Islander descent are at increased risk for developing the disease. African Americans are about 3 times more likely than Whites to develop end-stage kidney disease (ESKD or kidney failure). Compared to non-Hispanics, Hispanics are almost 1.3 times more likely to receive a diagnosis of kidney failure.
The National Kidney Foundation (NKF) is the largest, most comprehensive, and longstanding patient-centric organization dedicated to the awareness, prevention, and treatment of kidney disease in the U.S. For more information about NKF, visit www.kidney.org.
Friday, August 16, 2019
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