by Madaline Spencer and James Radke, PhD | Jul 12, 2023
Jill Kiernan summarizes the latest research involving Tatton Brown Rahman Syndrome (TBRS). Jill is the executive director of the TBRS Community, a patient advocacy group committed to bringing together families, clinicians, and researchers interested in this rare...
by Madaline Spencer and Peter Ciszewski | Jul 11, 2023
Kim Moran, Ph.D., MBA, Head of US Rare Diseases at UCB, discusses the use of phish finder programs to find undiagnosed patients. AI and data mining programs can help companies find persons with early symptoms of diseases based on clinical records....
by Madaline Spencer and James Radke, PhD | Jul 10, 2023
Frank Rivera of Stronger Than Sarcoidosis and Sarcoidosis of Long Island, two patient advocacy groups focused on raising awareness and research, discusses the rare disease. Sarcoidosis is a rare, systemic, inflammatory disorder characterized by the...
by CheckRare Staff | Jul 6, 2023
Jill Kiernan explains Tatton Brown Rahman Syndrome (TBRS). Jill is the executive director of the TBRS Community, a patient advocacy group committed to bringing together families, clinicians, and researchers interested in this rare disease. TBRS is a rare...
by Madaline Spencer and James Radke, PhD | Jul 5, 2023
Brad Chapman, Head of US Epilepsy and Rare Syndromes at UCB, discusses the recent decision by the US Drug Enforcement Agency (DEA) to deschedule fenfluramine. In 2020, the FDA approved Fenfluramine as a serotonin agonist for the treatment of seizures caused by...
