Medunik Advisory Board Meeting
Dietitians’ Meeting/Webinar:
- Dietary Practices of Inherited Metabolic Disorders in the UK
- Recent Clinical Data and Experience with GMP in PKU Treatment
- Experiencing the PKU Diet, an RD’s Perspective
Highlights and Updates on Fabry Disease: Adult and Pediatric Outcomes
1405-1425
Fabry Disease in Children. Expectant Follow Up or ERT?
1425-1455
Management and Outcomes in Adults with Fabry Disease – Lessons From the CFDI Study
1455-1525
Fabry Disease: Who to Treat and When to Stop. The VUS Project and the Canadian Fabry Treatment Guidelines
1525-1540
When Enzyme Replacement Therapy Fails – Case Presentation
1540-1600
Discussion
1600-1700
Treatment Considerations for Neurodegenerative IEMs: Leukodystrophies and Epilepsies
1700-1800
Fatty Acid Oxidation PKU
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Evening
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1830-2100
Welcome Reception
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FRIDAY MAY 20
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Breakfast
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0730-0830 – Breakfast Symposium
A Difficult to Identify Metabolic Disease: Late Onset Lysosomal Acid Lipase Deficiency | Sponsored by Alexion
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Morning
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0830-0835
Welcome Remarks
0835-1000
Morning Session 1: The National Working Group Experience
Canadian Inherited Metabolic Diseases Research Network (CIMDRN)
1000-1030
Refreshment Break & Poster Viewing
1030-1230
Morning Session 2: Development of Treatments, Evidence and Policy
1030-1100
Introduction/Overview: A 360 Degree Review on Rare Disease Drug Development
1100-1130
Development of Treatments, Evidence and Policy
1130-1200
Platform Presentations of Selected Abstracts
1200–1230
Assessment of Health Technologies and Value Based Decision Making
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Lunch
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1230-1330 – Lunch Symposium
New Evidence and Treatment in the Management of PKU | Sponsored by BioMarin
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Afternoon
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1330-1445
Afternoon Session 1: Mitochondrial Disorders and Innovative Therapies 1
1330-1345
MitoCanada
1345-1400
Platform Presentation of Selected Abstracts
1400-1445
Treatment of Mitochondrial Disorders
1445-1500
Refreshment Break & Poster Viewing
1500-1730
Afternoon Session 2: Innovative Therapies 2
1500-1545
Cell Based Therapies for Metabolic Disorders
1545-1630
Treatment of the Hepatic Glycogen Storage Diseases
1630–1730
Updates and Evidence: Management and Treatment of Urea Cycle Disorders
1730-1830
Cocktails and Poster Viewing
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Evening
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1900-2200
Garrod Gala
Lobster Dinner with entertainment at Pier 21 Museum
Garrod Pioneer Award Presentation
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SATURDAY MAY 21
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Breakfast
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0800-0900
Breakfast Symposium | Patient Directed Outcomes
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Morning
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0900-1100
Morning Session 1: High Throughput Technologies for Personalized Management of IEM
0900-0930
Genomics to Diagnose Neurometabolic Disease: Bigger Always Better?
0930-1000
Expanding Screening and Diagnostic Capacity for Amino Acidurias Through Tandem Mass Spectrometry
1000-1030
New Twists on Old Biomarkers
1030-1100
Mass Spectrometry Biomarker Analysis for the Identification, Monitoring and Follow-up of Patients
1100-1115
Refreshment Break & Poster Viewing
1115-1300
Morning Session 2: Enhancement of Established Therapies
1115-1215
Updates on Guidelines for Dietary Treatment of IEM
1115-1145
European Dietary Guidelines of Propionic Acidaemia (PA) and Methylmalonic Aciduria (MMA)
1145-1215
Dietary Management of Tyrosinemia
1215-1245
Platform Presentations of Selected Abstracts
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1245-1300
Wrap-up and Closing Remarks
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Lunch
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1300-1400
Principles in Biomarker Discover and Translational Research in Lysosomal Storage Diseases | Sponsored by Shire
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Afternoon
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1400-1600
Garrod Association Membership Meeting
1700
Closing Social – Brewery Tour and Unwind!
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SUNDAY MAY 22
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Annual CanPKU Meeting
Location: IWK Health Centre, Halifax NS
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