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

Tuberous Sclerosis Alliance

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 info@tsalliance.org.

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 Alliance; Allergy & Asthma Network; Alport Syndrome Foundation; Angelman Syndrome Foundation; Autism Science Foundation; Batten Disease Support and Research Association; Neil S. Belloff, Esq. - Chief Operating Officer and General Counsel, Eloxx Pharmaceuticals, Inc.; BPAN Warriors; Brain Donor Project; Bridge the Gap - SYNGAP Education and Research Foundation; Jeffrey R. Buchhalter, MD; CACNA1A Foundation; Child Neurology Foundation; Wendy Chung, MD, PhD - Kennedy Family Professor of Pediatrics and Medicine, Chief, Clinical Genetics, Columbia University; Coalition to Cure CHD2; COMBINEDBrain; Peter B. Crino, MD, PhD - Chair, Department of Neurology, University of Maryland School of Medicine, Chair, Tuberous Sclerosis Alliance Board of Directors; CURE Epilepsy; CureSHANK; Cute Syndrome Foundation; Cystic Fibrosis Research, Inc.; Danny Did Foundation; Dravet Syndrome Foundation; Dup15q Alliance; Epilepsy Foundation; FamilieSCN2A Foundation; Kyle Fink, PhD - Institute for Regenerative Cures, UC Davis School of Medicine; FOXG1 Research Foundation; Global Genes; Global Liver Institute; Glut1 Deficiency Foundation; GRIN2B Foundation; HCU Network America; Hermansky-Pudlak Syndrome Network; Hope for Hypothalamic Hamartomas; Hope for ULD; IGA Nephropathy Foundation; International Cystinuria Foundation; International Foundation for CDKL5 Research; KCNQ2 Cure Alliance; KIF1A.ORG; Darcy 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 DC; Jeremy Levin, DPhil, MB BChir - CEO, Ovid Therapeutics, Chairman, The Biotechnology Innovation Organization; LGS (Lennox-Gastaut Syndrome) Foundation; National Alliance for Caregiving; NORSE Institute; PACS1 Syndrome Research Foundation; PCDH19 Alliance; phaware global association; Phelan-McDermid Syndrome Foundation; Primary Ciliary Dyskinesia Foundation; Project 8p; Pulmonary Fibrosis Foundation; Amit Rakhit, MD, MBA - President and Chief Medical Officer, Ovid Therapeutics; RARE-X; Rare Epilepsy Network (REN); RASopathies Network; Ring14 USA; Mustafa 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 Foundation; Jill Silverman, PhD - MIND Institute, UC Davis School of Medicine; SLC6A1 Connect; SNAP25 Foundation; STXBP1 Foundation; SynGAP Research Fund (SRF); Tbc1d24 Foundation; TESS Research Foundation for SLC13A5 Epilepsy; The Brain Recovery Project: Childhood Epilepsy Surgery Foundation; The Global Foundation for Peroxisomal Disorders; The LAM FoundationThe Schinzel-Giedion Syndrome Foundation; Tuberous Sclerosis Alliance; Wishes for Elliott/DEE-P Connections

Jaye Isham, jisham@tsalliance.org
Vice President, Communications Strategy
Tuberous Sclerosis Alliance

Source: Tuberous Sclerosis Alliance