Conference Program

Official program of E.S.PKU conference 2019

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Common Program

Breaks / Meals
Family Program

Side Program
Delegates Program *

* for member delegates only

Professionals Program **

** for professionals only

E.S.PKU Conference 2019

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Patient Program
Scientific Program
Delegate Program
07:30
08:00
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
22:30
Thursday
Thursday
Welcome Reception
19:30 - 21:00
Welcome Reception
19:30 - 21:00
Patient Program
Scientific Program
Delegate Program

Friday
Friday
Breakfast
07:30 - 08:30
Breakfast
07:30 - 08:30
Patient Program
Scientific Program
Delegate Program

Conference Opening
08:30 - 08:50
Eric Lange, Francjan van Spronsen
Conference Opening
08:30 - 08:50
Patient Program
Scientific Program
Delegate Program

Care for PKU in Izmir
08:50 - 09:15
Prof. Coker
Care for PKU in Izmir
08:50 - 09:15
Patient Program
Scientific Program
Delegate Program

Microbiotica in PKU: Why is it important? How do we interpret data?
09:15 - 09:40
Prof Coskun, MD, PhD
Microbiotica in PKU: Why is it important? How do we interpret data?
09:15 - 09:40
Patient Program
Scientific Program
Delegate Program

Dietary treatment: What does it bring, what does it cost?
09:40 - 09:50
Prof MacDonald, RD, PhD
Dietary treatment: What does it bring, what does it cost?
Patient Program
Scientific Program
Delegate Program

Sapropterin treatment: What does it bring, what does it cost?
09:50 - 10:00
Prof van Spronsen, MD, PhD
Sapropterin treatment: What does it bring, what does it cost?
Patient Program
Scientific Program
Delegate Program

Pegvaliase treatment: What does it bring, what does it cost?
10:00 - 10:20
Prof Harding, MD, PhD
Pegvaliase treatment: What does it bring, what does it cost?
10:00 - 10:20
Patient Program
Scientific Program
Delegate Program

Discussion
10:20 - 10:30
Discussion
Patient Program
Scientific Program
Delegate Program

Coffee Break & Industry Exhibition
10:30 - 11:00
Coffee Break & Industry Exhibition
10:30 - 11:00
Patient Program
Scientific Program
Delegate Program

Family Approach for PKU child rearing
11:00 - 11:25
Prof.Dr. Burcu Ozbaran
Family Approach for PKU child rearing
11:00 - 11:25
Patient Program

Delegates Program
11:00 - 12:45
Delegates Program
11:00 - 12:45
Delegate Program

From mice to pig to human: What can we learn from what?
11:00 - 11:25
Prof Harding, MD, PhD
From mice to pig to human: What can we learn from what?
11:00 - 11:25
Scientific Program

PKU - A fathers perspective
11:25 - 11:50
Mr. Engin Baran
PKU - A fathers perspective
11:25 - 11:50
Patient Program

The evaluation of the composition of amino acid mixtures and low protein food products and their circuit of dispensation in France
11:25 - 11:45
Prof Feillet, MD, PhD
The evaluation of the composition of amino acid mixtures and low protein food products and their circuit of dispensation in France
11:25 - 11:45
Scientific Program

Growth in PKU: a systematic review and results of a longitudinal study
11:45 - 12:05
Mrs Gokmen, RD and Mrs Ilgaz, RD
Growth in PKU: a systematic review and results of a longitudinal study
11:45 - 12:05
Scientific Program

Different Country attitudes to PKU
11:50 - 12:15
Dr. Burcu Ozturk
Different Country attitudes to PKU
11:50 - 12:15
Patient Program

Discussion
12:05 - 12:15
Discussion
Scientific Program

Falling ill while travelling abroad
12:15 - 12:45
Marketa Rysava
Falling ill while travelling abroad
12:15 - 12:45
Marketa Rysava
Patient Program

High-throughput screening of potential PKU therapy targets
12:15 - 12:30
High-throughput screening of potential PKU therapy targets
Scientific Program

The effect of phenylalanine supplementation on phenylalanine and tyrosine concentrations in Tyrosinaemia type 1 patients
12:30 - 12:45
The effect of phenylalanine supplementation on phenylalanine and tyrosine concentrations in Tyrosinaemia type 1 patients
Scientific Program

Lunch
12:45 - 14:00
Lunch
12:45 - 14:00
Patient Program
Scientific Program
Delegate Program

Sameer’s story -from Afghanistan- refugee problems and experience
14:00 - 14:30
Mr. Ahmad Reshad Noori PhD
Sameer’s story -from Afghanistan- refugee problems and experience
14:00 - 14:30
Mr. Ahmad Reshad Noori PhD
Patient Program

Delegates Program
14:00 - 16:00
Delegates Program
14:00 - 16:00
Delegate Program

Effect of BH4 on variations of blood phenylalanine and tyrosine over 24 hours and from day to day in PKU patients
14:00 - 14:15
van Wegberg, RD, Msc
Effect of BH4 on variations of blood phenylalanine and tyrosine over 24 hours and from day to day in PKU patients
Scientific Program

It takes a global effort to achieve personalized PKU treatment: at least for most common mutations
14:15 - 14:30
Nafisinia, PhD
It takes a global effort to achieve personalized PKU treatment: at least for most common mutations
Scientific Program

Patient rights ; UN Human Bill of Rights & invisible disabilty
14:30 - 15:00
Mr. Gürkan Sert & Mrs. Zeynep Taydas
Patient rights ; UN Human Bill of Rights & invisible disabilty
14:30 - 15:00
Mr. Gürkan Sert & Mrs. Zeynep Taydas
Patient Program

Mental health in adults with PKU relative to patients with other inherited metabolic disorders
14:30 - 14:45
Wilcox, MD, FRACP
Mental health in adults with PKU relative to patients with other inherited metabolic disorders
Scientific Program

Quality improvement report using HADS, BECKS and a retrospective audit to monitor mental health sympoms in adult PKU patients at a large UK metabolic clinic
14:45 - 15:00
Altman, MD
Quality improvement report using HADS, BECKS and a retrospective audit to monitor mental health sympoms in adult PKU patients at a large UK metabolic clinic
Scientific Program

Annalise / TYR Patient story and her new organisation
15:00 - 15:30
Annaliese
Annalise / TYR Patient story and her new organisation
15:00 - 15:30
Annaliese
Patient Program

Does the protein intake in PKU patients adhere to the European PKU guidelines?
15:00 - 15:15
Prof Rocha, RD, PhD
Does the protein intake in PKU patients adhere to the European PKU guidelines?
Scientific Program

Discussion
15:15 - 15:30
Discussion
Scientific Program

ISTANBUL PKU CAFE presentation
15:30 - 16:00
Hasibe Kılınc & Havva Gurel
ISTANBUL PKU CAFE presentation
15:30 - 16:00
Hasibe Kılınc & Havva Gurel
Patient Program

Bone density in adults with PKU
15:30 - 16:00
Lubout, MD
Bone density in adults with PKU
15:30 - 16:00
Lubout, MD
Scientific Program

Coffee Break & Industry Exhibition
16:00 - 16:30
Coffee Break & Industry Exhibition
16:00 - 16:30
Patient Program
Scientific Program
Delegate Program

How to calculate PHE in a social situation
16:30 - 17:00
Prof. Dr. Hulya Gokmen Ozel
How to calculate PHE in a social situation
16:30 - 17:00
Prof. Dr. Hulya Gokmen Ozel
Patient Program

Delegates Program
16:30 - 17:30
Delegates Program
16:30 - 17:30
Delegate Program

What should we look for in neurocognitive profile?
16:30 - 16:55
Huijbregts, PhD
What should we look for in neurocognitive profile?
16:30 - 16:55
Scientific Program

Pegvaliase: clinical data
16:55 - 17:25
Prof Harding, MD, PhD
Pegvaliase: clinical data
16:55 - 17:25
Prof Harding, MD, PhD
Scientific Program

My Life and My PKU
17:00 - 17:30
Tom Chimiak
My Life and My PKU
17:00 - 17:30
Tom Chimiak
Patient Program

Home visits: what does it bring, what does it cost, what should be done, who should do it?
17:25 - 18:00
Daly, RD, Gökmen-Ozal, RD, Rodenburg, RD, Msc
Home visits: what does it bring, what does it cost, what should be done, who should do it?
17:25 - 18:00
Daly, RD, Gökmen-Ozal, RD, Rodenburg, RD, Msc
Scientific Program

Patients Meet Professionals
18:00 - 19:00
Patients Meet Professionals
18:00 - 19:00
Patient Program
Scientific Program
Delegate Program

Buffet Dinner
19:30 - 21:00
Buffet Dinner
19:30 - 21:00
Patient Program
Scientific Program
Delegate Program

Annual General Meeting
21:00 - 22:00
only for members
Annual General Meeting
21:00 - 22:00
only for members
Delegate Program

Saturday
Saturday
Breakfast
07:30 - 08:30
Breakfast
07:30 - 08:30
Patient Program
Scientific Program
Delegate Program

Patient thoughts and expectations about Centres of Excellence for PKU
08:30 - 08:45
van Wegberg, RD, Msc
Patient thoughts and expectations about Centres of Excellence for PKU
Patient Program
Scientific Program
Delegate Program

Sleep disturbances in Phenylketonuria in four European countries
08:45 - 09:15
van der Goot, MSc
Sleep disturbances in Phenylketonuria in four European countries
08:45 - 09:15
van der Goot, MSc
Patient Program
Scientific Program
Delegate Program

Aspartame content in the same drinks varies in different European countries
09:15 - 09:30
Heiner, PhD
Aspartame content in the same drinks varies in different European countries
Patient Program
Scientific Program
Delegate Program

Introduction: Home monitoring: and future treatments
09:30 - 09:45
Introduction: Home monitoring: and future treatments
Patient Program
Scientific Program
Delegate Program

Home monitoring presentations
09:45 - 10:05
by companies
Home monitoring presentations
09:45 - 10:05
Patient Program
Scientific Program
Delegate Program

Discussion
10:05 - 10:30
Discussion
10:05 - 10:30
Patient Program
Scientific Program
Delegate Program

Coffee Break & Industry Exhibition
10:30 - 11:00
Coffee Break & Industry Exhibition
10:30 - 11:00
Patient Program
Scientific Program
Delegate Program

Future treatments presentations
11:00 - 12:20
by companies
Future treatments presentations
11:00 - 12:20
by companies
Patient Program
Scientific Program
Delegate Program

ESPKU Presidents' response
12:20 - 12:35
Eric Lange
ESPKU Presidents' response
Patient Program
Scientific Program
Delegate Program

Discussion
12:35 - 13:00
Discussion
12:35 - 13:00
Patient Program
Scientific Program
Delegate Program

Sheila Jones Award & Closing Ceremony
13:00 - 13:30
Sheila Jones Award & Closing Ceremony
13:00 - 13:30
Patient Program
Scientific Program
Delegate Program

Lunch
13:30 - 14:30
Lunch
13:30 - 14:30
Patient Program
Scientific Program
Delegate Program

Poster Session
14:30 - 16:00
Poster Session
14:30 - 16:00
Patient Program
Scientific Program
Delegate Program

Cooking Demonstration
16:00 - 18:00
Hotel Garden
Cooking Demonstration
16:00 - 18:00
Hotel Garden
Patient Program
Scientific Program
Delegate Program

Ballroom Dinner
19:30 - 22:30
Ballroom Dinner
19:30 - 22:30
Patient Program
Scientific Program
Delegate Program

E.S.PKU Conference 2019
Friday