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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. With our partners we will also be submitting this letter to every state over the coming weeks.

VIEW THE LETTER

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.

DOWNLOAD TEMPLATE LETTER