видео v3 пациенты с болезнью Фабри

This educational program, hosted by Dawn Laney, MS, CGC, CCRC, Genetic Counselor and Program Leader for the Lysosomal Storage Disease Center at Emory University, and Staci Kallish, DO, Associate Professor of Clinical Medicine in the Division of Translational Medicine and Human Genetics at the University of Pennsylvania, examines how best to respond to patients concerns about how their Fabry disease, and its comorbidities, are managed. This program features a dialogue between patients who express their unmet needs, while two renowned Fabry disease experts translate these challenges into actionable clinical strategies. Topics covered include 1) symptoms that patients believe are not being well managed by their medical team, 2) whether the risk of stroke or heart failure is being properly addressed by medical teams, 3) whether the risk of kidney failure is being properly addressed by medical teams, and 4) how well the medical team works together and understands Fabry disease. This educational program is a non-CME activity made possible by an unrestricted grant from Amicus Therapeutics Faculty Dawn Laney, MS, CGC, CCRC Genetic Counselor, Division of Medical Genetics Program Leader, Lysosomal Storage Disease Center Emory University School of Medicine Disclosures Consulting agreements: Amicus Therapeutics, Chiesi, Sanofi Member: North American and International Fabry Registry Boards Staci Kallish, DO Associate Professor of Clinical Medicine Division of Translational Medicine and Human Genetics Perelman School of Medicine, University of Pennsylvania Disclosures Research grants: ashibio, Astellas Pharma, , Amicus Therapeutics Idorsia Therapeutics, Incyte , Ipsen, and Sanofi Consulting: Amicus Therapeutics, Sanofi Advisory board: Amicus Therapeutics, Intrabio, Sanofi Speaking honoraria: Amicus Therapeutics, Astellas, Sanofi Learning Objectives Upon completion of this program, participants will be able to: • Recognize the real-world burdens facing Fabry patients and implement strategies to alleviate them. • Identify and overcome barriers to managing heart concerns in patients with Fabry disease. • Identify and overcome barriers to managing kidney concerns in patients with Fabry disease. • Orchestrate a cohesive, multidisciplinary team approach to care.