CURE Epilepsy has signed on to a letter from a coalition led by the Tuberous Sclerosis Alliance that asks the National Governors Association to prioritize people with rare diseases, including rare epilepsies, and their caregivers for COVID-19 vaccine distribution.
Sixty-nine advocacy organizations, healthcare providers and biotech companies formed a coalition urging the governors of U.S. states to include people with rare diseases and their caregivers in the current and high-risk phases of their state’s vaccination rollout. People with rare diseases, including rare epilepsies, can have severe comorbidities and be at increased risk of catastrophic outcomes of COVID-19 infection. They may require daily hands-on care from their caregivers, and if those caregivers are exposed to the virus, isolation from those they care for could cause severe, irreversible damage.