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
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.
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.
Tuberous Sclerosis Alliance. The campaign is underwritten by presenting sponsor Neurelis, Inc. with generous supporting funding from UCB, Inc. SAP Week will highlight the need for people with epilepsy to have a conversation with their healthcare providers, especially if they are in a key subgroup who would benefit from a seizure action plan like those who have intractable epilepsy syndromes, who are at high risk for seizure clusters, status epilepticus or have frequent nocturnal generalized tonic-clonic seizures, said Dr. Tracy Dixon-Salazar, LGS Foundation Executive Director.
SAP Awareness Week features a social media campaign and new website designed to highlight the need for people with epilepsy, their caregivers and healthcare providers to develop detailed plans, especially should an emergency occur. The social media campaign incorporates the hashtag #SAPAW2021 and urges people to learn more at SeizureActionPlans.org.