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Global Genetic Disorders Partnering Deals Report/Directory 2021: Trends, Players and Financials 2014-2021

Global Genetic Disorders Partnering Deals Report/Directory 2021: Trends, Players and Financials 2014-2021

'My Children Both Live With a Rare Disease'

My Children Both Live With a Rare Disease Phil Tallman On 5/7/21 at 6:03 AM EDT Head injuries are scary–especially when they happen to young children. So, in 2019, when my then three-year-old son Colton hit his head falling off a jungle gym and started throwing up, we were terrified. My wife Jackie and I immediately rushed him to our local emergency room to be evaluated. While Colton didn t have a concussion like we initially feared, but what we did learn that day has impacted our family more than we could have ever imagined. Colton s reaction to the impact and the vomiting meant medical staff at the emergency room wanted to run a CT scan to ensure he didn t have a skull fracture. He didn t, but they noticed other potential problems and sent the scans to a neurologist at Lurie Children s Hospital in Chicago. With no immediate treatment possible, we went home to allow Colton to rest. At that stage, we hardly had any information, so we were anxious all night.

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