Did you know, people of AANHPI descent face a significantly higher risk of developing IgA Nephropathy (IgAN)?
In fact, individuals from Asian American, Native American, Pacific Islander (AANHPI) communities are more likely to:
AANHPI communities are also the fastest-growing ethnic group in the U.S., yet they face unique challenges in accessing early diagnoses and care due, in part, to a mix of cultural, linguistic, health system and other barriers.
Although rare, IgAN is a major cause of kidney failure – and it disproportionately affects AANHPI individuals. Raising awareness, improving access to screening, engaging communities and sharing culturally relevant information are crucial to helping patients and families find answers and support earlier in their journey. The IgA Nephropathy Foundation’s Asian IgAN Awareness Initiative
is dedicated to addressing these disparities and driving meaningful action through culturally sensitive resources, strategic community partnerships programs and an ongoing commitment to IgAN research, including studies to better understand the genetic and other factors that might make someone more prone to developing IgAN.
IgAN disproportionately affects people of Asian descent – finding it early can make a world of difference. We’re here for you and to help close the gaps.
Why Focus on AANHPI Communities? The unequal burden of IgAN
IgA Nephropathy doesn’t affect everyone equally. If you’re of Asian or Pacific Islander descent, your risk of developing IgAN may be significantly higher — and yet it’s not often talked about. This can lead to potentially avoidable delays in diagnoses and time can be greater kidney decline.
Here’s what the research shows:
- Asians may account for as many as 1 out of 3 new IgAN cases and this varies among AAPI populations.
- In East Asian countries, IgAN is the #1 cause of kidney failure.
- In global kidney biopsy data find that 40-50% of Asian patients have IgAN, compared to 20–30% in Europeans less than 1% in African populations.
- AAPI individuals tend to experience more aggressive disease and worse prognosis overall – even after adjusting for other risk factors. They:
- Have a higher relative risk of progressing to end-stage renal disease (ESRD) compared with White or other ethnic groups
- Often experience faster declines in kidney function compared with other ethnic groups
- In the U.S., kidney failure due to IgAN is 5 times higher among Asian Americans compared to Whites—and 15 times higher than among Blacks
What is IgAN?
- IgA Nephropathy (IgAN) is a rare autoimmune kidney disease. It’s cause by a buildup of IgA immunoglobulin – a protein or antibody that usually helps the body fight infection – in the kidneys. Over time, IgA clogs the kidneys’ filtering units, leading to inflammation, scarring and serious damage to the kidneys.
- The tricky part? Early symptoms may not be noticeable. Common signs to look out for:
- Foamy or dark, cola-colored urine
- Swelling in legs or feet (edema)
- Unexplained high blood pressure
- Feeling tired for no clear reason
- Diagnosis requires urine and blood tests and, ultimately, a kidney biopsy to confirm IgAN.
Don’t wait for symptoms. Ask your doctor for a urine test – it’s a simple way to check if your kidneys are healthy. - While there is no cure yet, early detection can make a difference and allow for steps to be taken that may delay the progression to kidney failure.
How We’re Taking Action
Closing gaps, driving solutions
- Raising awareness of IgAN and addressing disparities head-on: Through a multi-pronged approach, we are working to elevate awareness of and action around IgAN among Asian communities through culturally tailored education, advocacy and partnerships. These efforts aim to bridge critical gaps in awareness, screening and care.
- Listening and learning from lived experience: Through focus groups and community listening events funded by research, we have gathered insights from Asian Americans living with IgAN. These stories speak to cultural influences, language barriers and a need for more accessible care. This invaluable input is already helping shape more tailored programming, clinician and community worker education, awareness and advocacy.
- Promoting early screening: Routine urine and blood pressure checks can detect kidney disease early – even before symptoms appear. We are working with other groups to promote early screening and IgAN, especially in areas with large Asian populations.
Free community screenings – through our partnership with Kidney Disease Screening and Awareness Program (KDSAP), free kidney screenings and health education are offered to underserved populations across the country, many in neighborhoods where Asian Americans live
- Offering culturally relevant, accessible resources: Coming soon – Download our multilingual fact sheets, care guides and culturally appropriate resources designed to support patients and families from Asian communities [Coming soon!]
- Clinical Trial Education and Research Access OR Improving Representation in Research: Despite the elevated risk of IgAN among Asians, individual participation in clinical studies remains low. The Foundation offers up-to-date IgAN-related trial information and educates patients about the role of research studies in findings new and better treatments. More diverse data means better treatments for everyone. **Add your voice to help ensure studies can appropriately gauge the true prevalence of IgAN in our communities.**
- Building Community Partnerships: We are proud to be building alliances with organizations whose mission is to improve Aisan health outcomes. Together, we can raise awareness, build trust, expand our reach, and ensure programs are culturally relevant, aligned with cultural values, and can be disseminated where people are.
Stay tuned for updates on our growing list of partnering organizations and events.
Resources and Ways to Get Involved
- Join our community – become a member and connect with others who share your experience and cultural journey.
- Share your story – help reduce stigma and raise awareness.
- Explore our trusted resources – including tailored tools and questions to consider.
- Join the IgANHope Registry – the data is secure and will help shine a light on factors that play a role in IgAN diagnoses and progression and advance science and care
- Take the IgAN Risk Quiz – learn about potential risk factors.
Volunteer or help fundraise to support this important work!
Stay tuned for more information
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