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

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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 s ....

University Of Cincinnati , United States , Neils Belloff , Patroski Lawson , Kari Rosbeck , Kyle Fink , Wendy Chung , Jill Silverman , Jeffreyr Buchhalter , Amit Rakhit , Jeremy Levin , Darcya Krueger , Peterb Crino , Jaye Isham , Mustafa Sahin , Ciliary Dyskinesia Foundation , Translational Neuroscience Center , National Alliance For Caregiving , Danny Did Foundation , Arts Alliance , University Of Cincinnati College Medicine , International Foundation , Angelman Syndrome Foundation , Therapeutics Inc , Childhood Epilepsy Surgery Foundation , University Of Maryland School Medicine ,

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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University Of Cincinnati , United States , Neils Belloff , Patroski Lawson , Kari Rosbeck , Kyle Fink , Wendy Chung , Jill Silverman , Jeffreyr Buchhalter , Amit Rakhit , Jeremy Levin , Darcya Krueger , Peterb Crino , Jaye Isham , Mustafa Sahin , Ciliary Dyskinesia Foundation , Translational Neuroscience Center , National Alliance For Caregiving , Danny Did Foundation , Arts Alliance , University Of Cincinnati College Medicine , International Foundation , Angelman Syndrome Foundation , Therapeutics Inc , Childhood Epilepsy Surgery Foundation , University Of Maryland School Medicine ,

Envara Health logo. (PRNewsfoto/Envara Health)

Envara Health logo. (PRNewsfoto/Envara Health)
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Cf Community , Cystic Fibrosis Research Inc , Envara Health , Rare Disease Day , Gaining Or Losing Weight , Cystic Fibrosis Research , சிஎஃப் சமூக , சிஸ்டிக் ஃபைப்ரோஸிஸ் ஆராய்ச்சி இன்க் , ரேர் நோய் நாள் , பெறுகிறது அல்லது இழக்கிறது எடை , சிஸ்டிக் ஃபைப்ரோஸிஸ் ஆராய்ச்சி ,

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
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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. ....

United States , Corriea Fisher , Siri Vaeth , University Of Pennsylvania Perelman School Medicine , Cf Community , Cystic Fibrosis Research Inc , Envara Health , Disease Day , Gaining Or Losing Weight , Cystic Fibrosis Research , Director Siri Vaeth , Johanson Blizzard Syndromes , Pennsylvania Perelman School , Fibrosis Research , ஒன்றுபட்டது மாநிலங்களில் , பல்கலைக்கழகம் ஆஃப் பென்சில்வேனியா பெரல்மேன் பள்ளி மருந்து , சிஎஃப் சமூக , சிஸ்டிக் ஃபைப்ரோஸிஸ் ஆராய்ச்சி இன்க் , நோய் நாள் , பெறுகிறது அல்லது இழக்கிறது எடை , சிஸ்டிக் ஃபைப்ரோஸிஸ் ஆராய்ச்சி , பென்சில்வேனியா பெரல்மேன் பள்ளி , ஃபைப்ரோஸிஸ் ஆராய்ச்சி ,

Renowned Nutrition Expert Puts Rare Disease Day on the Radar

Renowned Nutrition Expert Puts Rare Disease Day on the Radar
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United States , Corriea Fisher , Siri Vaeth , University Of Pennsylvania Perelman School Medicine , Cf Community , Cystic Fibrosis Research Inc , Envara Health , Rare Disease Day , Gaining Or Losing Weight , Cystic Fibrosis Research , Disease Day , Director Siri Vaeth , Johanson Blizzard Syndromes , Pennsylvania Perelman School , Fibrosis Research , ஒன்றுபட்டது மாநிலங்களில் , பல்கலைக்கழகம் ஆஃப் பென்சில்வேனியா பெரல்மேன் பள்ளி மருந்து , சிஎஃப் சமூக , சிஸ்டிக் ஃபைப்ரோஸிஸ் ஆராய்ச்சி இன்க் , ரேர் நோய் நாள் , பெறுகிறது அல்லது இழக்கிறது எடை , சிஸ்டிக் ஃபைப்ரோஸிஸ் ஆராய்ச்சி , நோய் நாள் , பென்சில்வேனியா பெரல்மேன் பள்ளி , ஃபைப்ரோஸிஸ் ஆராய்ச்சி ,