The TSC Alliance® is an internationally recognized nonprofit that does everything it takes to improve the lives of people with tuberous sclerosis complex (TSC). Nearly one million people worldwide have TSC. Some live independently with few symptoms while others require complex care.
TSC is a rare genetic disease that causes tumors to grow in different organs, from the brain and heart to the lungs and kidneys to the skin and eyes. Changes in the brain caused by TSC have the biggest impact on quality of life, from seizures and developmental delays to intellectual disabilities, behavioral challenges and autism. TSC is the leading genetic cause of epilepsy, including infantile spasms. A strong correlation also exists between TSC and autism—an estimated 40-50% of individuals with TSC have autism spectrum disorder.
When TSC presents itself in the brain, it can seriously affect quality of life. TSC-associated neurological disorders (TAND) include a wide range of cognitive, behavioral and psychiatric challenges linked to the disease’s impact on brain function. Autism spectrum disorder (ASD), intellectual disabilities, neuropsychological deficits, aggressive behaviors and more can impact people with TSC and their families.
The TSC Alliance is a source of hope and connection for all affected by TSC. We drive research, increase care quality and access and advocate with and for people affected by the disease. Through our collaboration and partnerships, we’ve advanced FDA-approved treatments and created support systems around the world so that no one has to navigate TSC alone.
The TSC community is our strongest ally. With the power of families and the support of donors, volunteers, researchers, educators, industry partners, and more, we can create a future where everyone with TSC can realize their full potential—no matter how complex their journeys are to get there. Join us at tscalliance.org or contact us at info@tscalliance.org
