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 coming weeks.
"Due to the complexity of such diseases like TSC, rare disease patients are at an increased high risk for neurological and organ damage if they are infected with COVID-19," said Kari Rosbeck, President and Chief Executive Officer of the TS Alliance. "Additionally, if their caregivers are exposed and forced to quarantine, it adds additional concerns for irreversible outcomes associated with lack of care and potentially catastrophic consequences for those with rare diseases. This is why prioritizing individuals with rare diseases -- as well as their caregivers -- in state vaccination plans is an urgent matter."
Over the course of the past year, the pandemic has uniquely impacted the rare disease community, in some cases leading to disease regression. Families have lost access to vital resources such as physical, occupational, and speech therapies, and many have also experienced delays in routine care management due to the high risk of exposure to COVID-19 in their communities.
"This pandemic has highlighted the unique struggles of the rare disease community. We feel we have the responsibility to join forces with nonprofits and advocacy groups to the betterment of the patients we serve," said Dr. Jeremy Levin, Chairman and CEO of Ovid Therapeutics, Inc., one of the letter's signatories. "As states work through their vaccination rollout plans, we strongly urge them to prioritize rare disease communities because of the unique and heightened risks they face."
About TS Alliance
The TS Alliance is dedicated to finding a cure for tuberous sclerosis complex while improving the lives of those affected. For more information, visit tsalliance.org, call 800-225-6872 or email [email protected].
About Ovid Therapeutics
Ovid Therapeutics Inc. is a New York-based biopharmaceutical company using its BoldMedicine® approach to develop medicines that transform the lives of patients with rare neurological disorders. The company is working in rare epilepsies, rare developmental and epileptic encephalopathies. Angelman syndrome, Fragile X syndrome, KIF1A, and other disorders. For more information on Ovid, visit ovidrx.com.