TS Alliance Advocates for Prioritization of Individuals with Rare Diseases and Caregivers for COVID-19 Vaccines
The Tuberous Sclerosis Alliance (TS Alliance) led a coalition of nearly 50 advocacy groups and healthcare providers in urging Governor Andrew Cuomo of New York to include individuals with rare diseases and primary caregivers of high-risk individuals as priorities in the administration of any FDA-approved or authorized COVID-19 vaccines. The coalition submitted a jointly signed letter to Governor Cuomo on Monday, January 15, 2021.
On February 12, 2021, the TS Alliance led a group of 69 advocacy groups, healthcare providers and biotech companies to submit a letter to the National Governors Association. To date, 74 partners have signed onto a letter that has been submitted to several states and will be submitted to every state over the coming weeks.
Additionally, the TS Alliance created a template letter for parents and caregivers of individuals with tuberous sclerosis complex (TSC) to personalize and submit to their respective Governors.