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TS Alliance Advocates for Prioritization of Rare Disease Patients and Caregivers for COVID-19 Vaccines

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

TS Alliance Advocates for Prioritization of Rare Disease Patients and Caregivers for COVID-19 Vaccines
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Renowned Nutrition Expert Puts Rare Disease Day on the Radar

Renowned Nutrition Expert Puts Rare Disease Day on the Radar Dr. Virginia A. Stallings Discusses Individualized Nutrition Therapy for People with Cystic Fibrosis News provided by Share this article Virginia A. Stallings, M.D., highlights the nutritional challenges and therapies for people living with one of those rare diseases, cystic fibrosis (CF). An in-depth discussion/presentation by Dr. Stallings, entitled, Individualized Nutrition Therapy For People With Cystic Fibrosis: Gaining Or Losing Weight, will be featured on the Cystic Fibrosis Research Inc. (CFRI) podcast, Rare Disease Day, held annually on the final day of February, recognizes the 6,000+ rare diseases worldwide, 72 percent of which are genetic. More than 300 million people live with a rare disease across the globe. There are 30,000 people in the U.S. and 70,000 worldwide diagnosed with cystic fibrosis, managing its many debilitating effects on the respiratory and digestive systems.

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