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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Patient/Relatives Program
Professionals Program
Delegates Program
08:30
09:00
09:30
10:00
10:30
11:00
11:30
12:00
12:30
13:00
13:30
14:00
14:30
15:00
15:30
16:00
16:30
17:00
17:30
18:00
18:30
19:00
19:30
20:00
20:30
21:00
21:30
22:00
Thursday
Thursday
Dinner
19:00 - 21:00
Dinner
19:00 - 21:00
Patient
Professional
Delegate

Friday
Friday
Welcome
08:45 - 09:00
Welcome
Patient
Professional
Delegate

Fergus Woodcock, Eric Lange, Prof Francjan von Spronson

09:00 - 09:05
Common Program
Patient
Professional
Delegate

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
Patient
Professional
Delegate

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
Patient
Professional
Delegate

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
Patient
Professional
Delegate

Prof Maria Gizewska

Coffee Break
10:15 - 10:45
Coffee Break
10:15 - 10:45
Patient
Professional
Delegate

Sheila Jones Story
10:45 - 11:30
Sheila Jones Story
10:45 - 11:30
Patient

Welcome to all delegate's
10:45 - 11:00
Welcome to all delegate's
Delegate

Eric Lange

Opening of Scientific Program
10:45 - 10:50
Opening of Scientific Program
Professional

Chaired by Prof Francjan van Spronsen and Prof Eileen Treacy

Towards elderly PKU
10:50 - 11:20
Towards elderly PKU
10:50 - 11:20
Professional

Dr Andrea Pillot

What's on in …
11:00 - 12:30
What's on in …
11:00 - 12:30
Delegate

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
Professional

Danique van Vliet

Late Diagnosed PKU from Australia
11:30 - 12:15
Late Diagnosed PKU from Australia
11:30 - 12:15
Patient

Free Orals 1-4
11:40 - 12:45
Free Orals 1-4
11:40 - 12:45
Professional

  1. Dr. Denise Ney: Bone health in PKU: a comparison of amino acid and glycomacropeptide medical foods
  2. Dr. Hani Alfheeaid: Diet-Induced Thermogenesis is Diminished Following Consumption of Phenylketonuria Type Meals
  3. Christine Brown, Metabolic Dietitian: Patient Input on New Treatments
  4. 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
Patient

Karen Farrell

Lunch Break
12:30 - 14:00
Lunch Break
12:30 - 14:00
Patient

Lunch Break
12:30 - 14:00
Lunch Break
12:30 - 14:00
Delegate

Lunch Break
12:45 - 14:00
Lunch Break
12:45 - 14:00
Professional

Mother of triplets with Phenylketonuria
14:00 - 14:20
Mother of triplets with Phenylketonuria
14:00 - 14:20
Patient

Leonie Tully

European Reference Network METAB-ERN
14:00 - 14:45
European Reference Network METAB-ERN
14:00 - 14:45
Delegate

Free Orals 5-9
14:00 - 15:30
Free Orals 5-9
14:00 - 15:30
Professional

  1. Dr Denise Ney: Glycomacropeptide for nutritional management of PKU: a randomized, controlled, crossover trial
  2. Danique van Vliet, MD/PhD student
  3. Dr. Naser Harzandi: Screening of phenylalanine ammonia lyase in cyanobacteria (Anabaena) isolated from IRAN.
  4. 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.
  5. 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
Patient

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
Patient

Mandy Macedo

Latest news from the EU
14:45 - 15:30
Latest news from the EU
14:45 - 15:30
Delegate

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
Patient

Debbie Colyer

Coffee Break
15:30 - 16:00
Coffee Break
15:30 - 16:00
Patient
Professional
Delegate

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
Patient

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
Delegate

European Guidelines
16:00 - 16:30
European Guidelines
16:00 - 16:30
Delegate

Opening Nutrition in PKU
16:00 - 16:05
Opening Nutrition in PKU
Professional

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
Professional

Dr S Friso

Global Perspectives
16:30 - 17:00
Global Perspectives
16:30 - 17:00
Patient

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
Delegate

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
Professional

Dr Amaya Belanger

Glycomacropeptide in PKU treatment
16:55 - 17:20
Glycomacropeptide in PKU treatment
16:55 - 17:20
Professional

Prof Anita MacDonald

Glycomacropeptide in PKU treatment
16:55 - 17:20
Glycomacropeptide in PKU treatment
16:55 - 17:20
Professional

Prof Anita MacDonald

Climbing Kilimanjaro with PKU
17:00 - 17:30
Climbing Kilimanjaro with PKU
17:00 - 17:30
Patient

Peter Lavery

ESPKU: A Community?
17:15 - 18:15
ESPKU: A Community?
17:15 - 18:15
Delegate

Bi-lateral and multilateral cross-border cooperation of ESPKU member associations

Discussion
17:20 - 17:30
Discussion
Professional

Dinner
19:00 - 21:00
Dinner
19:00 - 21:00
Patient
Professional
Delegate

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
Patient
Professional
Delegate

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
Patient
Professional
Delegate

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
Patient
Professional
Delegate

Aria Setoodah

Coffee Break
10:15 - 10:45
Coffee Break
10:15 - 10:45
Patient
Professional
Delegate

Guidelines finished: the journey only starts now!
10:45 - 11:45
Guidelines finished: the journey only starts now!
10:45 - 11:45
Patient
Professional
Delegate

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
Patient
Professional
Delegate

Laurie Bernstein

Closing Ceremony
12:15 - 12:30
Closing Ceremony
Patient
Professional
Delegate

Lunch
12:30 - 14:00
Lunch
12:30 - 14:00
Patient
Professional
Delegate

Outings
14:00 - 18:00
Outings
14:00 - 18:00
Patient
Professional
Delegate

Gala Dinner
19:00 - 22:00
Gala Dinner
19:00 - 22:00
Patient
Professional
Delegate

Thursday
Friday
Saturday