by Madaline Spencer and James Radke, PhD | Jul 19, 2023
Karen Ball, founder of the Surge-Weber Foundation discusses Sturge-Weber Syndrome, a rare neurovascular disease. Sturge-Weber syndrome is a rare neurocutaneous disorder that primarily affects the skin and the central nervous system. It is characterized...
by Madaline Spencer and James Radke, PhD | Jul 18, 2023
Rennie McCarthy, Chief Executive Officer at Stealth Biotherapeutics, provides an overview of Barth syndrome. Mutations in the tafazzin (TAZ) gene cause Barth syndrome, a rare genetic disorder. This mutation results in reduced levels of cardiolipin, a...
by CheckRare Staff | Jul 17, 2023
Frank Rivera, a sarcoidosis patient, discusses his diagnostic journey, including a lung cancer misdiagnosis. Mr. Rivera is a member of Stronger that Sarcoidosis and Sarcoidosis of Long Island, two patient advocacy groups focused on raising awareness and research...
by CheckRare Staff | Jul 14, 2023
Tracy Dixon-Salazar, PhD, Executive Director of the Lennox-Gastaut Syndrome (LGS) Foundation, provides an overview of the disease, the disorder’s unique resistance to treatment, and what the foundation is doing to help this patient community. What Is...
by CheckRare Staff | Jul 13, 2023
Thomas Hutson, DO, PharmD, FACP, Director of the Urologic Oncology Program at Baylor University Medical Center and the Sarah Cannon Research Institute at Texas Oncology I The US Oncology Network discusses the recent advances made in kidney cancer treatment. This...
