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

Posted on March 21, 2021

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.

Co-Signers to the Letter:

Alagille Syndrome AllianceAllergy & Asthma NetworkAlport Syndrome FoundationAngelman Syndrome Foundation; Autism Science FoundationBatten Disease Support and Research AssociationNeil S. Belloff, Esq. – Chief Operating Officer and General Counsel, Eloxx Pharmaceuticals, Inc.; BPAN WarriorsBrain Donor ProjectBridge the Gap – SYNGAP Education and Research FoundationJeffrey R. Buchhalter, MDCACNA1A FoundationChild Neurology FoundationWendy Chung, MD, PhD – Kennedy Family Professor of Pediatrics and Medicine, Chief, Clinical Genetics, Columbia University; Coalition to Cure CHD2COMBINEDBrainPeter B. Crino, MD, PhD – Chair, Department of Neurology, University of Maryland School of Medicine, Chair, Tuberous Sclerosis Alliance Board of Directors; CURE EpilepsyCureSHANKCute Syndrome FoundationCystic Fibrosis Research, Inc.Danny Did FoundationDravet Syndrome FoundationDup15q AllianceEpilepsy FoundationFamilieSCN2A FoundationKyle Fink, PhD – Institute for Regenerative Cures, UC Davis School of Medicine; FOXG1 Research FoundationGlobal GenesGlobal Liver InstituteGlut1 Deficiency FoundationGRIN2B FoundationHCU Network AmericaHermansky-Pudlak Syndrome NetworkHope for Hypothalamic HamartomasHope for ULDIGA Nephropathy FoundationInternational Cystinuria FoundationInternational Foundation for CDKL5 ResearchKCNQ2 Cure AllianceKIF1A.ORGDarcy A. Krueger, MD PhD – Clack Endowed Chair in Tuberous Sclerosis, Director, Tuberous Sclerosis Clinic, Professor of Clinical Pediatrics and Neurology, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine and Chair, Tuberous Sclerosis Alliance Professional Advisory Board; Patroski Lawson, MSP – CEO, KPM Group DCJeremy Levin, DPhil, MB BChir – CEO, Ovid Therapeutics, Chairman, The Biotechnology Innovation Organization; LGS (Lennox-Gastaut Syndrome) FoundationNational Alliance for CaregivingNORSE InstitutePACS1 Syndrome Research FoundationPCDH19 Alliancephaware global associationPhelan-McDermid Syndrome FoundationPrimary Ciliary Dyskinesia FoundationProject 8pPulmonary Fibrosis FoundationAmit Rakhit, MD, MBA – President and Chief Medical Officer, Ovid TherapeuticsRARE-XRare Epilepsy Network (REN)RASopathies NetworkRing14 USAMustafa Sahin, MD, PhD – Director, Translational Neuroscience Center, Director, Translational Research Program, Rosamund Stone Zander Chair, Professor of Neurology, Harvard Medical School, Chair, Tuberous Sclerosis Alliance International Scientific Advisory Board; Scleroderma FoundationJill Silverman, PhD – MIND Institute, UC Davis School of Medicine; SLC6A1 ConnectSNAP25 FoundationSTXBP1 FoundationSynGAP Research Fund (SRF); Tbc1d24 FoundationTESS Research Foundation for SLC13A5 EpilepsyThe Brain Recovery Project: Childhood Epilepsy Surgery Foundation; The Global Foundation for Peroxisomal DisordersThe LAM FoundationThe Schinzel-Giedion Syndrome FoundationTuberous Sclerosis AllianceWishes for Elliott/DEE-P Connections

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