ULF ANNUAL FAMILY CONFERENCE 2025: CTX Alliance - Cerebrotendinous xanthomatosis (CTX)
CHAPTERS: 0:00 - Welcome 2:15 - Introduction to Genetic Cause and Clinical Signs & Symptoms, Dr. Bart Duell 21:00 - Understanding CTX through Biochemical Pathways, Dr. Andrea DeBarber 35:17 - Unveiling the Results of the Phase III RESTORE Clinical Trial, Dr. Bart Duell 51:26 - Exploring the Diverse Clinical Spectrum of CTX, Dr. Paulo Nobrega 1:09:40 - Breaking Barriers: Advancing Global Access to Treatment, Dr. Jonas Alex Saute 1:38:55 - Exploring Secondary Findings and the CTX Alliance Nomination Process, Dr. Robert Steiner 1:58:30 - Building a CTX Patient Registry: A Path to Valuable Research Data, Dr. Robert Steiner 2:13:17- A CTX Patient Registry: A Patient's Viewpoint, Ms. Abbey Cook 2:28:49 - Pediatric Cataracts and ClinGen: Bridging Genetics and Clinical Care, Dr. Jennifer Rossen 2:43:06 - CTX Alliance Update & Celebration: FDA Approval of Ctexli, Ms. Jean Pickford ULF ANNUAL FAMILY CONFERENCE 2025: CTX Alliance - Cerebrotendinous xanthomatosis (CTX) Disclaimer: The views and opinions expressed in this video are those of the individual(s) featured and do not necessarily reflect the official stance or views of the ULF. The ULF or CTX Alliance is not responsible for any content, statements, or claims made in this video.
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