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Ninth Annual TSC Global Awareness Day Scheduled for May 15

Ninth Annual TSC Global Awareness Day Scheduled for May 15 News provided by Share this article Share this article SILVER SPRING, Md., May 3, 2021 /PRNewswire/ On May 15, the Tuberous Sclerosis Alliance (TS Alliance) will join tuberous sclerosis complex (TSC) organizations around the world to observe the ninth annual TSC Global Awareness Day.  On this day, thousands of individuals and families affected by TSC will come together to increase public awareness of the rare disease and share their stories of hope for the future. 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. 

TS Alliance Advocates for Prioritization of Rare Disease Patients and Caregivers for COVID-19 Vaccines

Share this article Share this article SILVER SPRING, Md., March 3, 2021 /PRNewswire/  In partnership with more than 70 advocacy groups, healthcare providers, and biotech companies, the Tuberous Sclerosis Alliance (TS Alliance), an internationally recognized nonprofit that raises awareness and funds to fight the rare genetic disease tuberous sclerosis complex (TSC), recently issued a letter to the National Governors Association that calls on states to immediately prioritize Americans with life-threatening rare diseases in their COVID-19 vaccine rollouts. In late January, President Biden announced a strategy committed to vaccine distribution for high-risk individuals, specifically those with underlying conditions, including rare diseases. However, the 25-30 million individuals in the United States with rare diseases and their caregivers have yet to be prioritized in many states. The letter has already been submitted to several states and will be presented to every state in the

TS Alliance Advocates for Prioritization of Rare Disease Patients and Caregivers for COVID-19 Vaccines

TS Alliance Advocates for Prioritization of Rare Disease Patients and Caregivers for COVID-19 Vaccines
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Tuberous Sclerosis Alliance and Nobelpharma to Celebrate Rare Disease Day with New Partnership

Tuberous Sclerosis Alliance and Nobelpharma to Celebrate Rare Disease Day with New Partnership
prnewswire.com - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from prnewswire.com Daily Mail and Mail on Sunday newspapers.

The MiG Deal: Why My Father Had To Die

Twelve years ago today The Sunday Leader Editor, Lasantha Wickrematunge, was brutally murdered in broad daylight within a high security zone. His killers have never been punished. Here is why. When I first heard the phrase “MiG deal” as a kid in 2007, I never expected that less than two years later, the printing of those two words in my father’s newspaper would lead to my standing over his open grave on the darkest day of my life. It has long been clear to me, and to all those familiar with the evidence, that had my father not exposed the MiG deal in The Sunday Leader, he would still be alive today, still writing, still exposing wrongdoing, still standing tall against the powers that be. He knew the risks of exposing a man who cherished his holier than thou public persona, but the risk did not stop him from doing his job.

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