Join the American Kidney Fund in recognizing AMKD Awareness Day to better understand AMKD and discover how where you come from may impact your kidney health. Held on the last Tuesday of April, during National Minority Health Month, AMKD Awareness Day aims to raise awareness of APOL1-mediated kidney disease (AMKD).
AMKD is a group of kidney diseases linked to severe and rapidly progressive kidney disease in people of certain African descent. It is associated with mutations in the apolipoprotein L1 (APOL1) gene. Everyone has two copies of the APOL1 gene, but people who have Western and Central African ancestry, including those who are Black, African American, Afro-Caribbean, and/or Latina/Latino, are at an increased risk of having a mutation in one or both genes. People with two mutations are at higher risk of developing genetic forms of kidney disease such as focal segmental glomerulosclerosis (FSGS).
History of AMKD Awareness Day
Less than 20 years ago, the discovery of the APOL1 gene mutations’ connection to kidney disease was hailed as a significant breakthrough. This research helped shed light on the impact of genetics on racial disparities in kidney disease. In the United States, people of color are at increased risk for developing kidney failure, with Black Americans more than four times more likely to need dialysis or a transplant than white Americans. While racial disparities in kidney disease are primarily due to social determinants of health, structural racism, and lack of preventive care, among people with West or Central African ancestry, mutations of the APOL1 gene can cause certain forms of kidney disease that lead to kidney failure.
Unfortunately, not nearly enough people, including health care providers, know about APOL1-mediated kidney disease (AMKD). The American Kidney Fund’s goal in launching AMKD Awareness Day is to raise national awareness of AMKD so that people in affected communities will be aware of their potential risk, recognize symptoms, and share information about and how to test for AMKD with their family, their communities and providers.
AMKD Awareness Day timeline
Scientists discover the apolipoprotein L1 (APOL1) gene.
Scientists discover a connection between mutations in the APOL1 genes and kidney disease.
The American Kidney Fund launches the first AMKD Awareness Day.
How to Observe AMKD Awareness Day
1. Learn More
Learn about and share how our genes impact our kidney health at KidneyFund.org/APOL1Aware.
2. Share on Social Media
Use the resources available in the AMKD Awareness Day Community Toolkit, including images to share on all your social channels and sample social media posts (with hashtag #APOL1aware).
3. Share Your AMKD Story
View and share videos from patients with AMKD (or record your own!)
5 FACTS ABOUT THE APOL1 GENE
1. People of western and central African descent are at an increased risk of a mutation in one or both copies of the APOL1 gene. This includes people who are Black, African American, Afro-Caribbean and/or Latina/Latino.
2. The APOL1 gene creates proteins that play a role in immunity, our body’s built-in system to fight disease. Hundreds of years ago, the mutation associated with AMKD evolved as a way to protect the person from a parasite (carried by the tse tse fly) that causes African sleeping sickness. Today, we now know that while protecting from one disease, the APOL1 gene mutations also increase the risk for significant kidney damage in some people.
3. The exact number of people who have AMKD is not known, as researchers only discovered the role of the APOL1 gene mutations in kidney disease in 2010. However, it is estimated that 13% of (or 1 in 8) Black Americans have two APOL1 gene mutations.
4. If you have two copies of the high-risk APOL1 gene mutations, you are not guaranteed to develop kidney disease. You are at a higher risk of developing kidney disease (a 1 in 5 chance), but it typically develops after you also encounter an environmental trigger—like an inflammation or an infection like COVID-19—that acts as a “second hit” and increases the damage to your kidneys. You may not know what your “second hit” was, though, so knowing if you have the genetic mutations can help you more closely monitor your kidney health and make lifestyle choices now to help protect your kidneys.
5. The only way to know if your kidney disease is the result of APOL1 gene mutations is to do genetic testing. If you are interested in doing a genetic test, talk to your doctor and see if they can order the test for you or refer you to a genetic counselor. Find more information about genetic testing in AKF’s genetic counseling guide, including what to expect, the benefits of genetic testing, low or no-cost tests for eligible participants, the companies that offer tests and how to prepare.
AMKD Awareness Day FAQs
What is the APOL1 gene?
The APOL1 gene makes a protein that helps your immune system work to protect you from infections. You have two copies of the gene: one from each of your parents.
What is the APOL1 gene’s connection to kidney disease?
Most kidney disease is caused by diabetes and high blood pressure, but there are also genetic causes. Scientists discovered the role of the APOL1 gene mutations in kidney disease in 2010. APOL1-mediated kidney disease (AMKD) can cause damage to parts of the kidney that filter blood or, in some cases, cause cells in the kidney to die. This can lead to damage and scarring that can eventually lead to kidney failure.
Who is more likely to have a mutation in the APOL1 gene?
People of western and central African descent, including people who are Black, African American, Afro-Caribbean, and/or Latina/Latino, are more likely to have a mutation in one or both APOL1 genes.
How will I know if I have APOL1 gene mutations?
The only way to know if you have the APOL1 gene mutations is to do genetic testing. This testing would look for gene mutations with a sample of blood or saliva (spit).
You or your doctor may consider genetic testing if you have kidney disease and do not know the cause or if you are considering donating a kidney. You may also consider testing if you know a family member is a carrier of the APOL1 gene mutation.
Your doctor can order the genetic test or send you to a genetic counselor (a health care professional with specific training in genetics and counseling). If you have questions about genetic testing, talk with your doctor about your options or ask for a referral to a genetic counselor to learn more information.
What steps can I take to prevent kidney disease if I learn I have APOL1 gene mutations?
There are currently no treatments available for APOL1-mediated kidney disease. However, there are steps you can take to protect your kidneys and promote general health.
Your doctor will work with you to create a plan to prevent or delay the progression of kidney disease, which may include:
- Visits with your doctor to check how your kidneys are working through urine and blood tests
- Checking for and managing diabetes and high blood pressure
- A healthy eating plan. Your eating plan may involve limiting certain things, such as salt (sodium). Learn more about eating healthy.
- Taking all of your prescription medicines as your doctor tells you
- Being active at least 30 minutes a day on most days of the week
- Quitting smoking or using tobacco
Why AMKD Awareness Day is Important
Understand your risk
People of western and central African descent, including people who are Black, African American, Afro-Caribbean, and/or Latina/Latino, are more likely to have a mutation in one or both APOL1 genes.
Take charge of your health
AMKD progresses more rapidly than other forms or causes of kidney disease. If you have AMKD, you are more likely to develop kidney disease early in your life and your kidney disease is more likely to progress to kidney failure and faster than it would if you did not have AMKD. If you have the APOL1 gene mutations that cause kidney disease, you can begin to personalize a care plan with your doctor to help protect your kidney health.
Help protect your loved ones
Since AMKD is an inherited disease, it is likely that if you have the mutations, someone in your family does as well. Spreading awareness of AMKD can help protect your kidneys as well as your loved ones’.
AMKD Awareness Day dates
| Year | Date | Day |
|---|---|---|
| 2024 | April 30 | Tuesday |
| 2025 | April 29 | Tuesday |
| 2026 | April 28 | Tuesday |
| 2027 | April 27 | Tuesday |
| 2028 | April 25 | Tuesday |
