TSC Alliance® Debuts New TSC Navigator Online Tool

New Interactive Resource Available for Individuals and Families Affected by Tuberous Sclerosis Complex
Published: Oct. 14, 2021 at 4:00 AM AKDT

SILVER SPRING, Md., Oct. 14, 2021 /PRNewswire/ -- Today, the TSC Alliance® formally debuted its newest web-based resource, called TSC Navigator. TSC Navigator is an easy-to-use, interactive online tool to help guide individuals and families through the complexities of tuberous sclerosis complex (TSC) across the lifespan, proactively manage their care and live their fullest lives.

TS Alliance Logo (PRNewsfoto/TSC Alliance)
TS Alliance Logo (PRNewsfoto/TSC Alliance)

Tuberous sclerosis complex (TSC) is a rare disease that causes tumors to grow in different organs and can impair their function, primarily the brain, heart, kidneys, skin and lungs. Changes in the brain caused by TSC have the biggest impact on quality of life, from seizures and developmental delays to intellectual disabilities, behavioral challenges and autism.

"TSC is a complicated disease that affects no two people in same way," explained Kari Luther Rosbeck, President and CEO of the TSC Alliance. "Because each person's experience is unique, we developed TSC Navigator to help people better understand the various manifestations of the disease and how to address them at different stages of their lives."

TSC Navigator includes sections on "Beginning Your Journey," "Stories of Hope," "Medical Challenges," "Support Navigators" and "Resources."  Users can access information based on the age of one's TSC diagnosis, such as prenatal, childhood or adult, to help determine which steps will help empower them throughout their individual journeys.

"Time and time again, we hear how so many of the newly diagnosed are simply overwhelmed by the amount of information available about TSC," said TSC Alliance Director of Medical Affairs Ashley Pounders, MSN, FN-C, who oversaw the development of TSC Navigator. "Our goal with TSC Navigator is to offer an online tool that lets people choose how much, or how little, information they want at any given time. We hope this new resource will be beneficial to anyone touched by TSC."

TSC Navigator was created with lead sponsorships from Greenwich Biosciences and UCB as well as support from Upsher-Smith Laboratories, LLC; Novartis; Neurelis; LivaNova; Mallinckrodt; Nobelpharma;  LivaNova; Mallinckrodt; MassMutual/SpecialCare; Nobelpharma; and Horizon Therapeutics.

"We are very pleased to be supporting this new and important online tool for the TSC community," said Lisa De Boer, Vice President, U.S. Medical Affairs of Jazz Pharmaceuticals (formerly Greenwich Biosciences). "As TSC can be a complex disease, affecting many different systems of the body and causing a variety of signs and symptoms, the development of an interactive tool that helps support people living with tuberous sclerosis complex and those who care for them will be a valuable resource."

"We know it can be difficult for people living with epilepsy and seizure disorders to manage the complexities of their care and to live the lives they want. UCB is proud to support the TSC Navigator tool to help bridge the gap between healthcare providers and systems, so patients feel empowered to navigate their health and experience smoother care pathways," shared Mike Davis, Head of U.S. Neurology at UCB.

The TSC Alliance is an internationally recognized nonprofit that does everything it takes to improve the lives of people with TSC. It drives research, improves quality care, works to increase access and advocates for all affected by the disease. For more information, visit tscalliance.org.

Jaye Isham
Senior Vice President, Strategic Communications
TSC Alliance
(301) 562-9890

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