Volker Straub, Director of John Walton Muscular Dystrophy Research Centre, Newcastle University, UKġ2.45pm – 13.00pm: Symposia 3 – Ultragenyx: Long chain fatty acid oxidation defects (LC-FAODs): a group of rare disorders with a neuromuscular presentation, Shailly Jain, MD, FRCPC, FCCMG, Clinical Geneticist & Metabolics Specialist and Associate Professor, Edmonton Medical Genetics Clinic, University of Alberta.ġ3:00pm-13:10pm: Symposia 4 – Biogen: Spinal Muscular Atrophy Disease Registries: Overview and Recent Progress, Stephanie Raynaud, MD, Global Associate Medical Director, Biogenġ3.10pm – 13:55pm: Lunch, Exhibition & Posters LGMD Medical Lead and Global Medical Affairs at Sarepta Therapeutics Ltd.ġ2.30pm – 12.45pm: Symposia 2 – Roche: Equity, diversity & inclusion in DMD, Prof. In Limb-Girdle Muscular Dystrophy, André Müller-York, MD, Louis, Missouriġ1.50am – 12.10pm: Panel discussion & questionsġ2.10pm – 12.30pm: Symposia 1 – Sarepta: Community and CollaborationĪccelerating Research and Drug Development
Ercole luca trial#
SESSION TWO: Clinical trial considerations in ultra-rare patient groupsġ0.50am – 11.10am: Patient Advocacy, Sharon Hesterlee, MDAġ1.10am – 11.30am: Industry Perspective, Tristen Moors, Vice President, Clinical Operations at Glycomine, Incġ1.30am – 11.50am: Patient Identification, Chris Weihl, Professor of Neurology and Head of the Neuromuscular Section at Washington University School of Medicine in St.
Ercole luca registration#
18.00pm – 20.30pm: Early Registration & ExhibitionĨ.45am – 8.50am – Welcome, Jim Dowling, TREAT-NMD ChairĨ.50am – 9.00am: Introduction & TREAT-NMD Updates, David Allison, CEO, TREAT-NMDĩ.00am – 9.20am: Established groups, Erin Ward, President of MTM-CNM Family Connectionĩ.20am – 9.40am: Emerging groups, Terry Pirovolakis, founder of CureSPG50ĩ.40am – 10.00am: Emerging Groups, Rick Ferguson, CEO of the Daniel Ferguson Foundation and Dr Michelle Lorentzos, paediatric neurologist and Clinical Trials Medical Lead at The Children’s Hospital, Sydney, Australiaġ0.00am– 10.20am: Panel discussion & questionsġ0.20am – 10.50am: Refreshments, Exhibition & Posters
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