Join the Alport syndrome community in March as we celebrate the 5th annual Alport Awareness Month! The month-long campaign aims to spotlight this rare kidney disease and increase awareness during National Kidney Month.
The Need for Awareness
Rare Diseases like Alport syndrome sadly do not receive the same level of media attention given to diseases which affect millions of people and therefore have millions of voices spreading awareness. Alport syndrome is a rare disease that only affects roughly 30,000-60,000 individuals in the United States yet it accounts for 3% of children with chronic kidney disease and 0.2% of adults with end-stage renal disease (ESRD). In addition, Alport syndrome also affects hearing and, less frequently, vision, creating additional challenges for patients.
A Month vs. A Day
If you have ever had someone tell you, “I’ve never heard of Alport syndrome”, then you understand why Alport Awareness Month is necessary. And because we have a small patient community trying to educate a much larger public community, one day of awareness efforts is just not enough. Your participation in Alport Awareness Month is valuable not only to the work of our organization but more importantly it increases our ability to reach and help patients and families affected by Alport syndrome. There are still many people with this disease who do not know about the Foundation, our community, and the resources available to them. In many cases, they are also unaware of treatments that can prolong kidney function and delay the need for dialysis or a kidney transplant.
The theme for this year’s Alport Awareness Month is “Women and Alport syndrome”, which ties into the World Kidney Day theme with the same topic. Because of the way Alport syndrome is inherited, many women have delayed disease progression. Often, these women believe or are told that they are not at risk for developing kidney failure. Therefore, they do not receive regular monitoring of their kidneys or medications to prolong kidney function. This March, we want to get the word out so all women with Alport syndrome receive appropriate medical care for their kidneys.
How can you help?
Below are some resources that can help you learn more about Alport syndrome and become comfortable talking to others. ASF will provide additional information as we get closer to March.
Talking Points outlines how to share your story and awareness information
Fast Facts about Alport syndrome (printable flyer)
Fast Facts about Chronic Kidney Disease (printable flyer)
Fast Facts about the Alport syndrome Foundation (printable flyer)
Fast Facts about Rare Diseases (printable flyer)
ASF Brochure (digital)
Order copies of the ASF brochure. (Include quantity and mailing address.)
Now is the time to start planning!
Keep it simple! Make it fun! Share your story!
The easiest way to raise awareness is to incorporate something fun you love to do and invite family and friends to join you. You can get some great ideas from previous Alport Awareness Month efforts shown here.
We love to hear your creative ideas! Send us your photos and descriptions of your Alport Awareness efforts and we’ll add them to our website to help others with their planning.
You can spread awareness all year long by simply telling others your story of living with Alport syndrome.
ASF social media posts and blog articles can be shared regularly.