TSC Global Awareness Day Scheduled for May 15
SILVER SPRING, Md., May 2, 2013 /PRNewswire-USNewswire/ — On May 15, the Tuberous Sclerosis Alliance (TS Alliance) will join tuberous sclerosis complex (TSC) organizations around the world to observe the second annual TSC Global Awareness Day. On this day, thousands of individuals and families affected by TSC will join together to increase public awareness of the rare disease and share their stories of hope for the future.
This year’s TSC Global Awareness Day will also highlight the recent release of newly updated TSC clinical diagnosis, surveillance and maintenance guidelines. These guidelines, last updated in 1998, resulted from the 2012 TSC Clinical Consensus Conference, which brought together almost 100 of the world’s top TSC experts.
“These updated criteria will significantly impact early diagnosis, leading to better treatment and an improved quality of life for anyone affected by TSC,” said Kari Luther Rosbeck, President and CEO of the TS Alliance.
TSC is a genetic disorder that causes tumors to form in vital organs, primarily in the brain, eyes, heart, kidneys, skin and lungs. It is also the leading genetic cause of both autism and epilepsy. TSC is as common as Lou Gehrig’s disease or cystic fibrosis but is virtually unknown by the general population.
“One million people around the world are estimated to have TSC, with 50,000 or more right here in the United States,” Rosbeck explained. “Currently, there is no cure for TSC but ongoing research continues to be promising, not only for this disorder, but also for those suffering from autism, epilepsy and even cancer, because of TSC’s relation to the same genetic pathway.”
“At least two children born each day in the United States will have TSC,” Rosbeck continued. “However, many cases go undiagnosed due to obscurity of the disease, so events such as TSC Global Awareness Day are critically important to educate people about TSC as well as the importance of TSC research and how it relates to other more common diseases throughout the world.”
TSC Global Awareness Day is sponsored internationally by Tuberous Sclerosis Complex International (TSCi), a worldwide consortium of TSC organizations of which the TS Alliance is a member. Formed in 1974, the TS Alliance is dedicated to finding a cure for TSC, while improving the lives of those affected through the stimulation and sponsorship of research; development of programs, support services and resource information; and the development and implementation of public and professional education programs designed to heighten awareness of TSC.
For more information, visit www.tsalliance.org.
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SOURCE Tuberous Sclerosis Alliance