Conference Program
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This is a preliminary program, please make sure you get back to this page before the conference.Conference 2016
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Friday
Friday
Welcome
08:45 - 09:00
Welcome
Fergus Woodcock, Eric Lange, Prof Francjan von Spronson
09:00 - 09:05
Common Program
Chair: Prof. Maria Gizewska and Prof Eileen Treacy
Care for PKU in Ireland
09:05 - 09:25
Care for PKU in Ireland
09:05 - 09:25
Dr Ahmad Monavari
Do we know enough about Pathophysiology of PKU to know our treatment?
09:25 - 09:50
Do we know enough about Pathophysiology of PKU to know our treatment?
09:25 - 09:50
Prof Dr Francjan van Spronsen
Late diagnosed PKU: a need for treatment?
09:50 - 10:15
Late diagnosed PKU: a need for treatment?
09:50 - 10:15
Prof Maria Gizewska
Coffee Break
10:15 - 10:45
Coffee Break
10:15 - 10:45
Sheila Jones Story
10:45 - 11:30
Sheila Jones Story
10:45 - 11:30
Welcome to all delegate's
10:45 - 11:00
Welcome to all delegate's
Eric Lange
Opening of Scientific Program
10:45 - 10:50
Opening of Scientific Program
Chaired by Prof Francjan van Spronsen and Prof Eileen Treacy
Towards elderly PKU
10:50 - 11:20
Towards elderly PKU
10:50 - 11:20
Dr Andrea Pillot
What's on in …
11:00 - 12:30
What's on in …
11:00 - 12:30
Introduction of attending delegates
Presentation of the hosting Irish PKU Association
Presentation of members activies following a presentation template
Moving beyond phenylalanine levels to further optimize PKU management
11:20 - 11:40
Moving beyond phenylalanine levels to further optimize PKU management
11:20 - 11:40
Danique van Vliet
Late Diagnosed PKU from Australia
11:30 - 12:15
Late Diagnosed PKU from Australia
11:30 - 12:15
Free Orals 1-4
11:40 - 12:45
Free Orals 1-4
11:40 - 12:45
- 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
A mother of a child with Homocystinuria (HCU)
12:00 - 12:30
A mother of a child with Homocystinuria (HCU)
12:00 - 12:30
Karen Farrell
Lunch Break
12:30 - 14:00
Lunch Break
12:30 - 14:00
Lunch Break
12:30 - 14:00
Lunch Break
12:30 - 14:00
Lunch Break
12:45 - 14:00
Lunch Break
12:45 - 14:00
Mother of triplets with Phenylketonuria
14:00 - 14:20
Mother of triplets with Phenylketonuria
14:00 - 14:20
Leonie Tully
European Reference Network METAB-ERN
14:00 - 14:45
European Reference Network METAB-ERN
14:00 - 14:45
Free Orals 5-9
14:00 - 15:30
Free Orals 5-9
14:00 - 15:30
- 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:
My life with PKU and being a PKU Mother
14:20 - 14:40
My life with PKU and being a PKU Mother
14:20 - 14:40
Julie Cardy
Don't take no for an answer- one Mother's fight
14:40 - 15:00
Don't take no for an answer- one Mother's fight
14:40 - 15:00
Mandy Macedo
Latest news from the EU
14:45 - 15:30
Latest news from the EU
14:45 - 15:30
How the Australian Association fought the Government and won
15:00 - 15:30
How the Australian Association fought the Government and won
15:00 - 15:30
Debbie Colyer
Coffee Break
15:30 - 16:00
Coffee Break
15:30 - 16:00
Letting Go: How and When to Teach Self-Management Skills
16:00 - 16:30
Letting Go: How and When to Teach Self-Management Skills
16:00 - 16:30
Laurie Bernstein - Prof of Pediatrics at the University of Colorado
ESPKU's future agenda
16:00 - 17:15
ESPKU's future agenda
16:00 - 17:15
European Guidelines
16:00 - 16:30
European Guidelines
16:00 - 16:30
Opening Nutrition in PKU
16:00 - 16:05
Opening Nutrition in PKU
Chaired by Ahring and Prof Anita MacDonald
Epginetics and its influence on outcome in PKU
16:05 - 16:30
Epginetics and its influence on outcome in PKU
16:05 - 16:30
Dr S Friso
Global Perspectives
16:30 - 17:00
Global Perspectives
16:30 - 17:00
John Adams - President of CanPKU and Allied Disorders since 2008
ESPKU's future agenda
16:30 - 17:15
ESPKU's future agenda
16:30 - 17:15
Growth and weight gain in dietary treated PKU patients: a multicenter study
16:30 - 16:55
Growth and weight gain in dietary treated PKU patients: a multicenter study
16:30 - 16:55
Dr Amaya Belanger
Glycomacropeptide in PKU treatment
16:55 - 17:20
Glycomacropeptide in PKU treatment
16:55 - 17:20
Prof Anita MacDonald
Glycomacropeptide in PKU treatment
16:55 - 17:20
Glycomacropeptide in PKU treatment
16:55 - 17:20
Prof Anita MacDonald
Climbing Kilimanjaro with PKU
17:00 - 17:30
Climbing Kilimanjaro with PKU
17:00 - 17:30
Peter Lavery
ESPKU: A Community?
17:15 - 18:15
ESPKU: A Community?
17:15 - 18:15
Bi-lateral and multilateral cross-border cooperation of ESPKU member associations
Discussion
17:20 - 17:30
Discussion
Dinner
19:00 - 21:00
Dinner
19:00 - 21:00
Saturday
Saturday
Classical Homocystinuria and PKU in Qatar: To Better Meet Family and Patient Needs
08:45 - 09:15
Classical Homocystinuria and PKU in Qatar: To Better Meet Family and Patient Needs
08:45 - 09:15
Can a woman with PKU become a happy mother?
09:15 - 09:45
Can a woman with PKU become a happy mother?
09:15 - 09:45
Prof Maria Gizewska
PKU in Iran: what are the challenges to be met?
09:45 - 10:15
PKU in Iran: what are the challenges to be met?
09:45 - 10:15
Aria Setoodah
Coffee Break
10:15 - 10:45
Coffee Break
10:15 - 10:45
Guidelines finished: the journey only starts now!
10:45 - 11:45
Guidelines finished: the journey only starts now!
10:45 - 11:45
Annemiek van Wegberg/Prof Francjan J van Spronsen
How does your PKU play a role in your day?
11:45 - 12:15
How does your PKU play a role in your day?
11:45 - 12:15
Laurie Bernstein
Closing Ceremony
12:15 - 12:30
Closing Ceremony
Lunch
12:30 - 14:00
Lunch
12:30 - 14:00
Outings
14:00 - 18:00
Outings
14:00 - 18:00
Gala Dinner
19:00 - 22:00
Gala Dinner
19:00 - 22:00
Thursday
Friday
- Welcome08:45 - 09:00
- Common Program09:00 - 09:05
- Care for PKU in Ireland09:05 - 09:25
- Do we know enough about Pathophysiology of PKU to know our treatment?09:25 - 09:50
- Late diagnosed PKU: a need for treatment?09:50 - 10:15
- Coffee Break10:15 - 10:45
- Sheila Jones Story10:45 - 11:30
- Welcome to all delegate's10:45 - 11:00
- Opening of Scientific Program10:45 - 10:50
- Towards elderly PKU10:50 - 11:20
- What's on in …11:00 - 12:30
- Moving beyond phenylalanine levels to further optimize PKU management11:20 - 11:40
- Late Diagnosed PKU from Australia11:30 - 12:15
- Free Orals 1-411:40 - 12:45
- A mother of a child with Homocystinuria (HCU)12:00 - 12:30
- Lunch Break12:30 - 14:00
- Lunch Break12:30 - 14:00
- Lunch Break12:45 - 14:00
- Mother of triplets with Phenylketonuria14:00 - 14:20
- European Reference Network METAB-ERN14:00 - 14:45
- Free Orals 5-914:00 - 15:30
- My life with PKU and being a PKU Mother14:20 - 14:40
- Don't take no for an answer- one Mother's fight14:40 - 15:00
- Latest news from the EU14:45 - 15:30
- How the Australian Association fought the Government and won15:00 - 15:30
- Coffee Break15:30 - 16:00
- Letting Go: How and When to Teach Self-Management Skills16:00 - 16:30
- ESPKU's future agenda16:00 - 17:15
- European Guidelines16:00 - 16:30
- Opening Nutrition in PKU16:00 - 16:05
- Epginetics and its influence on outcome in PKU16:05 - 16:30
- Global Perspectives16:30 - 17:00
- ESPKU's future agenda16:30 - 17:15
- Growth and weight gain in dietary treated PKU patients: a multicenter study16:30 - 16:55
- Glycomacropeptide in PKU treatment16:55 - 17:20
- Glycomacropeptide in PKU treatment16:55 - 17:20
- Climbing Kilimanjaro with PKU17:00 - 17:30
- ESPKU: A Community?17:15 - 18:15
- Discussion17:20 - 17:30
- Dinner19:00 - 21:00
Saturday
- Classical Homocystinuria and PKU in Qatar: To Better Meet Family and Patient Needs08:45 - 09:15
- Can a woman with PKU become a happy mother?09:15 - 09:45
- PKU in Iran: what are the challenges to be met?09:45 - 10:15
- Coffee Break10:15 - 10:45
- Guidelines finished: the journey only starts now!10:45 - 11:45
- How does your PKU play a role in your day?11:45 - 12:15
- Closing Ceremony12:15 - 12:30
- Lunch12:30 - 14:00
- Outings14:00 - 18:00
- Gala Dinner19:00 - 22:00
