10 Easy Ways to Increase Alport Awareness

10 Easy Ways to Increase Alport Awareness

Alport Awareness Month begins in less than a week on March 1. March is also National Kidney Month, providing our community with plenty of reasons to increase awareness of Alport syndrome and the risks of chronic kidney disease. With your support, we can make this the single largest awareness campaign in the history of our organization!


What You Can Do
Thankfully, with modern technology, it’s never been easier to spread Alport syndrome Awareness! The ASF website offers numerous resources to help educate yourself and others. In addition, with so many people on social media every day it has become a powerful means of spreading information, connecting people and offering hope and support. Many patients who were previously unaware of the Foundation and the work we do have found connection and support with our community through social media.

You can help connect patients and families living with Alport Awareness and educate people not affected by using social media and other technology during March in any or all of the following 10 simple ways:

  1. Join ASF social media networks using the links at the top of this page and invite your contacts to do the same.
  2. Like ASF’s posts and share them with your own network.
  3. Change your profile image to our Alport Awareness Month Badge this month to spark conversations with others.
  4. Use ASF’s talking points to tell others in your community and on social media how Alport syndrome has impacted you and your family. Provide links to alportsyndrome.org and use hashtags #AlportSyndrome and #AlportAwareness.
  5. Spark a conversation by wearing and using ASF gear! Visit the ASF Store for clothing, mugs, car stickers and more.
  6. Distribute treatment recommendations to family members or other patients who may not be aware of current therapy guidelines.
  7. Order 10 (or more!) Alport syndrome brochures to share with friends, family, neighbors, co-workers and medical professionals. Tell your story!
  8. Join the Alport syndrome Treatments and Outcome Registry (ASTOR), the largest Alport syndrome registry in the world. There is power in numbers and we need you!
  9. Fundraise to benefit ASF either online or by hosting an event in your area. Check out these past events for ideas!
  10. Plan to attend one of our upcoming family meetings or 5K for Healthy Kidneys events as a means of aiding awareness efforts.

With so many ways to participate in Alport Awareness Month, it’s never been easier to join our community in raising awareness. Decide what steps you will take and make your plans now!

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.

Other Resources:
About Alport syndrome
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)

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