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FACE FORWARD, a new website focused on disease awareness, has launched with educational content on facial angiofibroma, an aspect of tuberous sclerosis complex. ....
Rare Leader: Tracy Dixon-Salazar, Executive Director, Lennox Gastaut Syndrome (LGS) Foundation globalgenes.org - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from globalgenes.org Daily Mail and Mail on Sunday newspapers.
A Map to Navigate a Rare Disease - Global Genes globalgenes.org - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from globalgenes.org Daily Mail and Mail on Sunday newspapers.
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 s ....