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The Blau Syndrome Educational Forum hosted Blau researchers and medical professionals, Carlos Rose, M.D. and Carine Wouters, M.D., Ph.D. Drs. Rose and Wouters  discussed the pathogenesis of Blau Syndrome and shared the  symptoms of Blau Syndrome found across an international sample of patients. This is a must watch for patients, families and professionals! 

In memory of Lexi and Hayden and with ho


Blau syndrome is a rare degenerative and life-threatening disease that robs those affected of their vision, mobility and in some cases their life.


Lexi was the original inspiration and founder of the Cure Blau Foundation. We ran out of time before we could find a cure for Lexi, but we carry on in her legacy for those who continue their battles with Blau.

There is currently no effective treatment for Blau. While our ultimate goal is a gene therapy and cure for Blau syndrome, we are exploring all options for an effective treatment. 

Every dollar matters. Every hour matters. Every voice matters. We all have the potential to help change the lives of those affected by Blau syndrome. Your donation of funds or volunteer hours can help us make medical history. Even just sharing our story will make a big difference. 

Help us turn hope into action to find a cure for this horrible disease. 

Troy Townsin, Founder

Do you have a story to share? 
Contact us at We would love to hear from you!

Ask a Researcher!

Have a question about Blau Syndrome? Submit your questions and each week an expert in Blau Syndrome will answer chosen questions on our Foundation Facebook and Instagram pages. If you'd like to remain anonymous, please enter as your email and leave "name" blank. 

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