Navigation Links
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

TS Alliance Media Contact:
Jaye Isham 
(301) 562-9890


SOURCE Tuberous Sclerosis Alliance
Copyright©2012 PR Newswire.
All rights reserved

Related medicine technology :

1. Algeta and Lumiphore Announce Further Expansion of Their Global Partnership for the Development of Targeted Alpha-pharmaceutical Cancer Therapeutics and Companion Diagnostics.
2. Hospira revela estrategia global para sus dispositivos
3. Hospira revela estratégia global para dispositivos
4. XBiotech to Present at UBS Global Healthcare Conference
5. GW Pharmaceuticals Announces Pricing of Initial Public Offering on the NASDAQ Global Market
6. Hospira Unveils Global Device Strategy
7. Deborah Autor, FDAs Deputy Commissioner for Global Regulatory Operations and Policy, to Join Mylan
8. DebMed Supports World Health Organizations Global "Save Lives: Clean Your Hands Day" on May 5
9. Pharmacy Automation Systems Market - Global Industry Analysis, Size, Share, Growth, Trends And Forecast, 2012 - 2018
10. Life Technologies Supports Global Effort to Help Accelerate Emergency Screening of Avian Influenza (H7N9) Virus
11. Lilly Celebrates National Volunteer Week with Deployment of Global Service Teams
Post Your Comments:
(Date:10/12/2015)... Calif. , Oct. 12, 2015  In a ... in the Journal of Neurology, Neurosurgery, and Psychiatry, the ... reduce brain atrophy and cognitive decline in patients in ... --> --> IVIG, extracted from ... antibodies to amyloid, an abnormal brain protein found in ...
(Date:10/12/2015)... Leadership of the National Association of Vision Care Plans (NAVCP) ... , CEO of MESVision resumed her role as Chairwoman following ... annual strategic planning meeting in Chicago ... from May 2013 to May of this year. She succeeds ... of the increased demands of his recent appointment to President ...
(Date:10/12/2015)...  CME Group,s Center for Innovation announced today ... is the 11 th recipient of the CME ... diagnostics company, Theranos , to change health care from ... era of preventive care. CME Group will present the award ... in Naples, Florida , on Tuesday, November ...
Breaking Medicine Technology:
(Date:10/12/2015)... Nashville, TN (PRWEB) , ... October 13, 2015 ... ... the recipients of its biannual Heroes in Recovery Awards at Foundations Recovery Network’s ... Foundations Recovery Network presented the one-of-a-kind awards to Noah Levine and Dean Dauphinais ...
(Date:10/12/2015)... North Carolina (PRWEB) , ... October 12, 2015 , ... Kevin Costello, winner of the ... North Carolina , embarks today for his dream vacation to Hawaii. , “I didn’t believe ... worked out,” he says. “This contest encouraged me to get to the gym and invest ...
(Date:10/12/2015)... (PRWEB) , ... October 12, 2015 , ... ... the practice of hypnosis by individuals who lack professional education and clinical training ... to the public for a variety of purposes such as: losing weight, managing ...
(Date:10/12/2015)... ... October 12, 2015 , ... At first glance, it ... umbrella one would find atop a drink in a tiki bar. But the Parachute® ... trial at Allegheny General Hospital (AGH) could potentially signal a new way of treating ...
(Date:10/12/2015)... ... October 12, 2015 , ... FEI Behavioral Health, a social ... to crisis management, will present a session at the Wisconsin Society for Human ... , FEI’s Chief Operating Officer Daniel Potterton will present an informative workshop, “Training ...
Breaking Medicine News(10 mins):