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Tuesday, March 1, 2016

Make It a Month for Alport Syndrome

Alport Syndrome is a genetic condition characterized by kidney disease, hearing loss and eye abnormalities. Nearly all those who have this syndrome have blood in their urine which indicates abnormal function of kidneys. Around 1 in 50,000 children are affected. While Alport can affect the eye the changes do not normally affect sight

The alport syndrom was first identified by the University of Edinburgh Medical School in 1927.

Many are not aware of Alport and therefore bringing awareness to this rare disease is very important.

Do you part by:

  • Joining ASF social media networks. 
  • Like ASFs posts and share on your own social networks
  • Share your story with others
  • Share your story on social networks use the hashtag #AlportSyndrome and #AlportAwareness
  • Do your part to check out the current therapy guides for your self or family members

Sadly while Alport is a devastating disease it does not receive the same level of attention that other diseases that affect millions of people do. Therefore it is important that those that can help share the information and draw awareness. Alport Syndrome is a rare disease that only affects 30-60 thousand individuals in the U.S. It accounts for 3% of children with chronic kidney disease and .2% adults with end stage renal disease. 

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