Conference Program
Important Information
This is a preliminary program, please make sure you get back to this page before the conference.Fergus Woodcock, Eric Lange, Prof Francjan von Spronson
Chair: Prof. Maria Gizewska and Prof Eileen Treacy
Dr Ahmad Monavari
Prof Dr Francjan van Spronsen
Prof Maria Gizewska
Eric Lange
Chaired by Prof Francjan van Spronsen and Prof Eileen Treacy
Dr Andrea Pillot
Introduction of attending delegates
Presentation of the hosting Irish PKU Association
Presentation of members activies following a presentation template
Danique van Vliet
- Dr. Denise Ney: Bone health in PKU: a comparison of amino acid and glycomacropeptide medical foods
- Dr. Hani Alfheeaid: Diet-Induced Thermogenesis is Diminished Following Consumption of Phenylketonuria Type Meals
- Christine Brown, Metabolic Dietitian: Patient Input on New Treatments
- Dr. Aoife Fitzgerald: The incidence of overweight & obesity in Irish children with PKU compared with the GUI Study
Karen Farrell
Leonie Tully
- Dr Denise Ney: Glycomacropeptide for nutritional management of PKU: a randomized, controlled, crossover trial
- Danique van Vliet, MD/PhD student
- Dr. Naser Harzandi: Screening of phenylalanine ammonia lyase in cyanobacteria (Anabaena) isolated from IRAN.
- Kirsten Ahring, Msc: Absorption of respectively Casein glycomacropeptide (CGMP-20) and free synthetic amino acids (AA) in phenylketonuria (PKU) patients in connection with standardized meal.
- Orla Purcell, Rd:
Julie Cardy
Mandy Macedo
Debbie Colyer
Laurie Bernstein - Prof of Pediatrics at the University of Colorado
Chaired by Ahring and Prof Anita MacDonald
Dr S Friso
John Adams - President of CanPKU and Allied Disorders since 2008
Dr Amaya Belanger
Prof Anita MacDonald
Prof Anita MacDonald
Peter Lavery
Bi-lateral and multilateral cross-border cooperation of ESPKU member associations
Prof Maria Gizewska
Aria Setoodah
Annemiek van Wegberg/Prof Francjan J van Spronsen
Laurie Bernstein
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Welcome08:45 - 09:00
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Common Program09:00 - 09:05
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Care for PKU in Ireland09:05 - 09:25
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Do we know enough about Pathophysiology of PKU to know our treatment?09:25 - 09:50
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Late diagnosed PKU: a need for treatment?09:50 - 10:15
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Coffee Break10:15 - 10:45
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Sheila Jones Story10:45 - 11:30
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Welcome to all delegate's10:45 - 11:00
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Opening of Scientific Program10:45 - 10:50
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Towards elderly PKU10:50 - 11:20
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What's on in …11:00 - 12:30
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Moving beyond phenylalanine levels to further optimize PKU management11:20 - 11:40
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Late Diagnosed PKU from Australia11:30 - 12:15
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Free Orals 1-411:40 - 12:45
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A mother of a child with Homocystinuria (HCU)12:00 - 12:30
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Lunch Break12:30 - 14:00
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Lunch Break12:30 - 14:00
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Lunch Break12:45 - 14:00
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Mother of triplets with Phenylketonuria14:00 - 14:20
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European Reference Network METAB-ERN14:00 - 14:45
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Free Orals 5-914:00 - 15:30
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My life with PKU and being a PKU Mother14:20 - 14:40
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Don't take no for an answer- one Mother's fight14:40 - 15:00
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Latest news from the EU14:45 - 15:30
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How the Australian Association fought the Government and won15:00 - 15:30
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Coffee Break15:30 - 16:00
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Letting Go: How and When to Teach Self-Management Skills16:00 - 16:30
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ESPKU's future agenda16:00 - 17:15
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European Guidelines16:00 - 16:30
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Opening Nutrition in PKU16:00 - 16:05
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Epginetics and its influence on outcome in PKU16:05 - 16:30
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Global Perspectives16:30 - 17:00
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ESPKU's future agenda16:30 - 17:15
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Growth and weight gain in dietary treated PKU patients: a multicenter study16:30 - 16:55
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Glycomacropeptide in PKU treatment16:55 - 17:20
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Glycomacropeptide in PKU treatment16:55 - 17:20
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Climbing Kilimanjaro with PKU17:00 - 17:30
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ESPKU: A Community?17:15 - 18:15
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Discussion17:20 - 17:30
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Dinner19:00 - 21:00
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Classical Homocystinuria and PKU in Qatar: To Better Meet Family and Patient Needs08:45 - 09:15
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Can a woman with PKU become a happy mother?09:15 - 09:45
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PKU in Iran: what are the challenges to be met?09:45 - 10:15
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Coffee Break10:15 - 10:45
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Guidelines finished: the journey only starts now!10:45 - 11:45
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How does your PKU play a role in your day?11:45 - 12:15
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Closing Ceremony12:15 - 12:30
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Lunch12:30 - 14:00
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Outings14:00 - 18:00
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Gala Dinner19:00 - 22:00