Conference Program

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

E.S.PKU Conference 2017

Filter:
Showing All
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
Friday
Friday
Breakfast
07:30 - 08:30
Breakfast
07:30 - 08:30
Patient Program
Scientific Program
Delegate Program

Welcome to Hell
08:45 - 09:00
Norwegian Chair/Eric Lange/Prof Francjan van Spronsen
Welcome to Hell
Patient Program
Scientific Program
Delegate Program

Care for PKU in Norway
09:00 - 09:20
Care for PKU in Norway
Patient Program
Scientific Program
Delegate Program

Where It All Started
09:20 - 09:45
Dr. Elgjo PKU
Where It All Started
09:20 - 09:45
Patient Program
Scientific Program
Delegate Program

How to Comfort Families With an Inborn Error of Metabolism and Keep Them Comfortable
09:45 - 10:10
Dr. Moldestad
How to Comfort Families With an Inborn Error of Metabolism and Keep Them Comfortable
09:45 - 10:10
Patient Program
Scientific Program
Delegate Program

Discussion
10:10 - 10:30
Chair Prof. Maria Gizewska and Dr. Joergensen
Discussion
Patient Program
Scientific Program
Delegate Program

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

The history behind the PKU discovery
11:00 - 11:30
Unni Eikseseth
The history behind the PKU discovery
11:00 - 11:30
Patient Program

Welcome to the ESPKU members’ delegates
11:00 - 11:15
Welcome to the ESPKU members’ delegates
Delegate Program

Is all PKU due to PAH deficiency ?
11:00 - 11:25
Prof. Thony
Is all PKU due to PAH deficiency ?
11:00 - 11:25
Scientific Program

Country update: What has been achieved since the last ESPKU Conference in Ireland?
11:15 - 12:00
Country update: What has been achieved since the last ESPKU Conference in Ireland?
11:15 - 12:00
Delegate Program

New Chaperones in PAH Deficiency
11:25 - 11:50
Prof Martinez
New Chaperones in PAH Deficiency
11:25 - 11:50
Scientific Program

Being a teenager with PKU; What 18 years old me should have told 13 year old me
11:30 - 11:55
Kaisa Haugen
Being a teenager with PKU; What 18 years old me should have told 13 year old me
11:30 - 11:55
Patient Program

PKU and the brain – looking beyond the white matter
11:50 - 12:15
Dr. Christ
PKU and the brain – looking beyond the white matter
11:50 - 12:15
Scientific Program

The importance of knowledge about PKU among local professionals. How Centre for rare disorders contributes to a holistic follow up.
11:55 - 12:20
Centre for rare disorders, Norway
The importance of knowledge about PKU among local professionals. How Centre for rare disorders contributes to a holistic follow up.
11:55 - 12:20
Patient Program

Why should patients associations get involved in the European Reference Network for Metabolic Diseases (METAB-ERN)?
12:00 - 13:00
Why should patients associations get involved in the European Reference Network for Metabolic Diseases (METAB-ERN)?
12:00 - 13:00
Delegate Program

Free Orals
12:15 - 13:00
Chaired by Prof Francjan van Spronsen and Dr Joergensen
Free Orals
12:15 - 13:00
Chaired by Prof Francjan van Spronsen and Dr Joergensen
Scientific Program

An Holistic Wellbeing Programme for Adults with an IEM
12:20 - 13:00
Louise Healy (Australian MDDA)
An Holistic Wellbeing Programme for Adults with an IEM
12:20 - 13:00
Louise Healy (Australian MDDA)
Patient Program

Lunch
13:00 - 14:00
Lunch
13:00 - 14:00
Patient Program
Scientific Program
Delegate Program

My PKU story, PKU in Romania
14:00 - 14:30
Roxana Cordea
My PKU story, PKU in Romania
14:00 - 14:30
Patient Program

The PKU Summer School
14:00 - 14:45
Florentina Peric (Croatia)
The PKU Summer School
14:00 - 14:45
Florentina Peric (Croatia)
Delegate Program

Free Orals
14:00 - 15:15
Chaired by Prof Maria Gizewska and K Ahring
Free Orals
14:00 - 15:15
Chaired by Prof Maria Gizewska and K Ahring
Scientific Program

Growing up with PKU on Iceland
14:30 - 14:55
Sigurbjörg Ólafsdóttir
Growing up with PKU on Iceland
14:30 - 14:55
Patient Program

The Global Association for Phenylketonuria
14:45 - 15:30
Tobias S. Hagedorn (ESPKU) and Deniz Atakay (Turkey)
The Global Association for Phenylketonuria
14:45 - 15:30
Tobias S. Hagedorn (ESPKU) and Deniz Atakay (Turkey)
Delegate Program

Strategies for Humanitarian Aid and Phenylketonuria: Gaza, Venezuela, Bolivia, refugees
14:55 - 15:30
Agata Bak, ASFEMA, Spain
Strategies for Humanitarian Aid and Phenylketonuria: Gaza, Venezuela, Bolivia, refugees
14:55 - 15:30
Agata Bak, ASFEMA, Spain
Patient Program

Discussion
15:15 - 15:30
Discussion
Scientific Program

Coffee Break
15:30 - 16:00
Coffee Break
15:30 - 16:00
Patient Program
Scientific Program
Delegate Program

Being a Top Athlete with PKU
16:00 - 16:30
Simen and Cathrine Myhre
Being a Top Athlete with PKU
16:00 - 16:30
Patient Program

Transition: How can we achieve any improvements of the current status of PKU care for adult patients?
16:00 - 17:00
Transition: How can we achieve any improvements of the current status of PKU care for adult patients?
16:00 - 17:00
Delegate Program

Pegvaliase: Results and challenges
16:00 - 16:30
Dr Zori
Pegvaliase: Results and challenges
16:00 - 16:30
Scientific Program

Traveling and Living in Other Countries With PKU
16:30 - 16:55
Marketa Rysalva
Traveling and Living in Other Countries With PKU
16:30 - 16:55
Patient Program

Nutritional resemblences between PKU and Tyrosinemia type I
16:30 - 16:55
Prof McDonald
Nutritional resemblences between PKU and Tyrosinemia type I
16:30 - 16:55
Scientific Program

Chronic Confidence
16:55 - 17:45
Louise Healy - Australian MDDA
Chronic Confidence
16:55 - 17:45
Louise Healy - Australian MDDA
Patient Program

Neurofunctional resemblences between PKU and Tyrosinemia type I
16:55 - 17:20
W van Ginkel
Neurofunctional resemblences between PKU and Tyrosinemia type I
16:55 - 17:20
Scientific Program

Any Other Business
17:00 - 18:00
Any Other Business
17:00 - 18:00
Delegate Program

Discussion
17:20 - 17:35
Chaired by Ahring and Prof Gizewska
Discussion
Scientific Program

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

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

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

Tyrosinemia Type I
08:45 - 09:10
Dr. Bliksrud
Tyrosinemia Type I
08:45 - 09:10
Patient Program
Scientific Program
Delegate Program

Breastfeeding in PKU and Tyrosinemia Type I
09:10 - 09:35
Mrs. Motzfeldt, RD
Breastfeeding in PKU and Tyrosinemia Type I
09:10 - 09:35
Patient Program
Scientific Program
Delegate Program

Experiences With Pegvaliase
09:35 - 10:00
Dr. Zori
Experiences With Pegvaliase
09:35 - 10:00
Patient Program
Scientific Program
Delegate Program

Coffee Break
10:00 - 10:30
Coffee Break
10:00 - 10:30
Patient Program
Scientific Program
Delegate Program

Can PKU and Tyrosinemia Type I Help Each Other ?
10:30 - 11:00
Prof. van Spronsen
Can PKU and Tyrosinemia Type I Help Each Other ?
10:30 - 11:00
Patient Program
Scientific Program
Delegate Program

New Insights Into PKU and the Brain
11:00 - 11:30
Dr. Christ
New Insights Into PKU and the Brain
11:00 - 11:30
Patient Program
Scientific Program
Delegate Program

ESPKU - Information Gap - Inspiration To Go Home With
11:30 - 12:15
ESPKU - Information Gap - Inspiration To Go Home With
11:30 - 12:15
Patient Program
Scientific Program
Delegate Program

Discussion
12:15 - 12:45
Discussion
12:15 - 12:45
Patient Program
Scientific Program
Delegate Program

Closing Ceremony
12:45 - 13:00
Closing Ceremony
Patient Program
Scientific Program
Delegate Program

Lunch
13:00 - 14:00
Lunch
13:00 - 14:00
Patient Program
Scientific Program
Delegate Program

Tour to Trondheim
14:00 - 18:00
Tour to Trondheim
14:00 - 18:00
Patient Program
Scientific Program
Delegate Program

Ballroom Dinner
19:30 - 22:00
Ballroom Dinner
19:30 - 22:00
Patient Program
Scientific Program
Delegate Program

E.S.PKU Conference 2017
Friday