Conference Program - E.S.PKU

Conference Program

Official Program for the E.S.PKU Conference 2017 in Hell, Norway

E.S.PKU Conference 2017

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Thursday

Informal Welcome Dinner and Mingling

Patient Program

Scientific Program

Delegate Program

Friday

Patient Program

Scientific Program

Delegate Program

Welcome to Hell

Patient Program

Scientific Program

Delegate Program

Care for PKU in Norway

Patient Program

Scientific Program

Delegate Program

Where It All Started

Patient Program

Scientific Program

Delegate Program

How to Comfort Families With an Inborn Error of Metabolism and Keep Them Comfortable

Patient Program

Scientific Program

Delegate Program

Patient Program

Scientific Program

Delegate Program

Patient Program

Scientific Program

Delegate Program

The history behind the PKU discovery

Patient Program

Welcome to the ESPKU members’ delegates

Delegate Program

Is all PKU due to PAH deficiency ?

Scientific Program

Country update: What has been achieved since the last ESPKU Conference in Ireland?

Delegate Program

New Chaperones in PAH Deficiency

Scientific Program

Being a teenager with PKU; What 18 years old me should have told 13 year old me

Patient Program

PKU and the brain – looking beyond the white matter

Scientific Program

The importance of knowledge about PKU among local professionals. How Centre for rare disorders contributes to a holistic follow up.

Patient Program

Why should patients associations get involved in the European Reference Network for Metabolic Diseases (METAB-ERN)?

Delegate Program

Chaired by Prof Francjan van Spronsen and Dr Joergensen

Scientific Program

An Holistic Wellbeing Programme for Adults with an IEM

Louise Healy (Australian MDDA)

Patient Program

Patient Program

Scientific Program

Delegate Program

My PKU story, PKU in Romania

Patient Program

The PKU Summer School

Florentina Peric (Croatia)

Delegate Program

Chaired by Prof Maria Gizewska and K Ahring

Scientific Program

Growing up with PKU on Iceland

Patient Program

The Global Association for Phenylketonuria

Tobias S. Hagedorn (ESPKU) and Deniz Atakay (Turkey)

Delegate Program

Strategies for Humanitarian Aid and Phenylketonuria: Gaza, Venezuela, Bolivia, refugees

Agata Bak, ASFEMA, Spain

Patient Program

Scientific Program

Patient Program

Scientific Program

Delegate Program

Being a Top Athlete with PKU

Patient Program

Transition: How can we achieve any improvements of the current status of PKU care for adult patients?

Delegate Program

Pegvaliase: Results and challenges

Scientific Program

Traveling and Living in Other Countries With PKU

Patient Program

Nutritional resemblences between PKU and Tyrosinemia type I

Scientific Program

Chronic Confidence

Louise Healy - Australian MDDA

Patient Program

Neurofunctional resemblences between PKU and Tyrosinemia type I

Scientific Program

Any Other Business

Delegate Program

Scientific Program

Patients Meet Professionals

Patient Program

Scientific Program

Delegate Program

Patient Program

Scientific Program

Delegate Program

Saturday

Patient Program

Scientific Program

Delegate Program

Tyrosinemia Type I

Patient Program

Scientific Program

Delegate Program

Breastfeeding in PKU and Tyrosinemia Type I

Patient Program

Scientific Program

Delegate Program

Experiences With Pegvaliase

Patient Program

Scientific Program

Delegate Program

Patient Program

Scientific Program

Delegate Program

Can PKU and Tyrosinemia Type I Help Each Other ?

Patient Program

Scientific Program

Delegate Program

New Insights Into PKU and the Brain

Patient Program

Scientific Program

Delegate Program

ESPKU - Information Gap - Inspiration To Go Home With

Patient Program

Scientific Program

Delegate Program

Patient Program

Scientific Program

Delegate Program

Closing Ceremony

Patient Program

Scientific Program

Delegate Program

Patient Program

Scientific Program

Delegate Program

Tour to Trondheim

Patient Program

Scientific Program

Delegate Program

Ballroom Dinner

Patient Program

Scientific Program

Delegate Program

E.S.PKU Conference 2017

Thursday

Informal Welcome Dinner and Mingling

20:00 - 22:00

Friday

Breakfast

07:30 - 08:30
Welcome to Hell

Norwegian Chair/Eric Lange/Prof Francjan van Spronsen

08:45 - 09:00
Care for PKU in Norway

09:00 - 09:20
Where It All Started

Dr. Elgjo PKU

09:20 - 09:45
How to Comfort Families With an Inborn Error of Metabolism and Keep Them Comfortable

Dr. Moldestad

09:45 - 10:10
Discussion

Chair Prof. Maria Gizewska and Dr. Joergensen

10:10 - 10:30
Coffee Break

10:30 - 11:00
The history behind the PKU discovery

Unni Eikseseth

11:00 - 11:30
Welcome to the ESPKU members’ delegates

11:00 - 11:15
Is all PKU due to PAH deficiency ?

Prof. Thony

11:00 - 11:25
Country update: What has been achieved since the last ESPKU Conference in Ireland?

11:15 - 12:00
New Chaperones in PAH Deficiency

Prof Martinez

11:25 - 11:50
Being a teenager with PKU; What 18 years old me should have told 13 year old me

Kaisa Haugen

11:30 - 11:55
PKU and the brain – looking beyond the white matter

Dr. Christ

11:50 - 12:15
The importance of knowledge about PKU among local professionals. How Centre for rare disorders contributes to a holistic follow up.

Centre for rare disorders, Norway

11:55 - 12:20
Why should patients associations get involved in the European Reference Network for Metabolic Diseases (METAB-ERN)?

12:00 - 13:00
Free Orals

Chaired by Prof Francjan van Spronsen and Dr Joergensen

12:15 - 13:00
An Holistic Wellbeing Programme for Adults with an IEM

Louise Healy (Australian MDDA)

12:20 - 13:00
Lunch

13:00 - 14:00
My PKU story, PKU in Romania

Roxana Cordea

14:00 - 14:30
The PKU Summer School

Florentina Peric (Croatia)

14:00 - 14:45
Free Orals

Chaired by Prof Maria Gizewska and K Ahring

14:00 - 15:15
Growing up with PKU on Iceland

Sigurbjörg Ólafsdóttir

14:30 - 14:55
The Global Association for Phenylketonuria

Tobias S. Hagedorn (ESPKU) and Deniz Atakay (Turkey)

14:45 - 15:30
Strategies for Humanitarian Aid and Phenylketonuria: Gaza, Venezuela, Bolivia, refugees

Agata Bak, ASFEMA, Spain

14:55 - 15:30
Discussion

15:15 - 15:30
Coffee Break

15:30 - 16:00
Being a Top Athlete with PKU

Simen and Cathrine Myhre

16:00 - 16:30
Transition: How can we achieve any improvements of the current status of PKU care for adult patients?

16:00 - 17:00
Pegvaliase: Results and challenges

Dr Zori

16:00 - 16:30
Traveling and Living in Other Countries With PKU

Marketa Rysalva

16:30 - 16:55
Nutritional resemblences between PKU and Tyrosinemia type I

Prof McDonald

16:30 - 16:55
Chronic Confidence

Louise Healy - Australian MDDA

16:55 - 17:45
Neurofunctional resemblences between PKU and Tyrosinemia type I

W van Ginkel

16:55 - 17:20
Any Other Business

17:00 - 18:00
Discussion

Chaired by Ahring and Prof Gizewska

17:20 - 17:35
Patients Meet Professionals

18:00 - 19:00
Buffet Dinner

19:00 - 21:00

Saturday

Breakfast

07:30 - 08:30
Tyrosinemia Type I

Dr. Bliksrud

08:45 - 09:10
Breastfeeding in PKU and Tyrosinemia Type I

Mrs. Motzfeldt, RD

09:10 - 09:35
Experiences With Pegvaliase

Dr. Zori

09:35 - 10:00
Coffee Break

10:00 - 10:30
Can PKU and Tyrosinemia Type I Help Each Other ?

Prof. van Spronsen

10:30 - 11:00
New Insights Into PKU and the Brain

Dr. Christ

11:00 - 11:30
ESPKU - Information Gap - Inspiration To Go Home With

11:30 - 12:15
Discussion

12:15 - 12:45
Closing Ceremony

12:45 - 13:00
Lunch

13:00 - 14:00
Tour to Trondheim

14:00 - 18:00
Ballroom Dinner

19:30 - 22:00