Conference Program
Official Program for the E.S.PKU Conference 2017 in Hell, Norway
E.S.PKU Conference 2017
Thursday
Thursday
Friday
Friday
Breakfast
07:30 - 08:30
Breakfast
07:30 - 08:30
Welcome to Hell
08:45 - 09:00
Norwegian Chair/Eric Lange/Prof Francjan van Spronsen
Welcome to Hell
Care for PKU in Norway
09:00 - 09:20
Care for PKU in Norway
Where It All Started
09:20 - 09:45
Dr. Elgjo PKU
Where It All Started
09:20 - 09:45
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
Discussion
10:10 - 10:30
Chair Prof. Maria Gizewska and Dr. Joergensen
Discussion
Coffee Break
10:30 - 11:00
Coffee Break
10:30 - 11:00
The history behind the PKU discovery
11:00 - 11:30
Unni Eikseseth
The history behind the PKU discovery
11:00 - 11:30
Welcome to the ESPKU members’ delegates
11:00 - 11:15
Welcome to the ESPKU members’ delegates
Is all PKU due to PAH deficiency ?
11:00 - 11:25
Prof. Thony
Is all PKU due to PAH deficiency ?
11:00 - 11:25
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
New Chaperones in PAH Deficiency
11:25 - 11:50
Prof Martinez
New Chaperones in PAH Deficiency
11:25 - 11:50
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
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
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
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
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
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)
Lunch
13:00 - 14:00
Lunch
13:00 - 14:00
My PKU story, PKU in Romania
14:00 - 14:30
Roxana Cordea
My PKU story, PKU in Romania
14:00 - 14:30
The PKU Summer School
14:00 - 14:45
Florentina Peric (Croatia)
The PKU Summer School
14:00 - 14:45
Florentina Peric (Croatia)
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
Growing up with PKU on Iceland
14:30 - 14:55
Sigurbjörg Ólafsdóttir
Growing up with PKU on Iceland
14:30 - 14:55
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)
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
Discussion
15:15 - 15:30
Discussion
Coffee Break
15:30 - 16:00
Coffee Break
15:30 - 16:00
Being a Top Athlete with PKU
16:00 - 16:30
Simen and Cathrine Myhre
Being a Top Athlete with PKU
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
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
16:00 - 16:30
Dr Zori
Pegvaliase: Results and challenges
16:00 - 16:30
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
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
Chronic Confidence
16:55 - 17:45
Louise Healy - Australian MDDA
Chronic Confidence
16:55 - 17:45
Louise Healy - Australian MDDA
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
Any Other Business
17:00 - 18:00
Any Other Business
17:00 - 18:00
Discussion
17:20 - 17:35
Chaired by Ahring and Prof Gizewska
Discussion
Patients Meet Professionals
18:00 - 19:00
Patients Meet Professionals
18:00 - 19:00
Buffet Dinner
19:00 - 21:00
Buffet Dinner
19:00 - 21:00
Saturday
Saturday
Breakfast
07:30 - 08:30
Breakfast
07:30 - 08:30
Tyrosinemia Type I
08:45 - 09:10
Dr. Bliksrud
Tyrosinemia Type I
08:45 - 09:10
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
Experiences With Pegvaliase
09:35 - 10:00
Dr. Zori
Experiences With Pegvaliase
09:35 - 10:00
Coffee Break
10:00 - 10:30
Coffee Break
10:00 - 10:30
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
New Insights Into PKU and the Brain
11:00 - 11:30
Dr. Christ
New Insights Into PKU and the Brain
11:00 - 11:30
ESPKU - Information Gap - Inspiration To Go Home With
11:30 - 12:15
ESPKU - Information Gap - Inspiration To Go Home With
11:30 - 12:15
Discussion
12:15 - 12:45
Discussion
12:15 - 12:45
Closing Ceremony
12:45 - 13:00
Closing Ceremony
Lunch
13:00 - 14:00
Lunch
13:00 - 14:00
Tour to Trondheim
14:00 - 18:00
Tour to Trondheim
14:00 - 18:00
Ballroom Dinner
19:30 - 22:00
Ballroom Dinner
19:30 - 22:00
E.S.PKU Conference 2017
Friday
- Breakfast07:30 - 08:30
- Welcome to HellNorwegian Chair/Eric Lange/Prof Francjan van Spronsen08:45 - 09:00
- Care for PKU in Norway09:00 - 09:20
- Where It All StartedDr. Elgjo PKU09:20 - 09:45
- How to Comfort Families With an Inborn Error of Metabolism and Keep Them ComfortableDr. Moldestad09:45 - 10:10
- DiscussionChair Prof. Maria Gizewska and Dr. Joergensen10:10 - 10:30
- Coffee Break10:30 - 11:00
- The history behind the PKU discoveryUnni Eikseseth11:00 - 11:30
- Welcome to the ESPKU members’ delegates11:00 - 11:15
- Is all PKU due to PAH deficiency ?Prof. Thony11:00 - 11:25
- Country update: What has been achieved since the last ESPKU Conference in Ireland?11:15 - 12:00
- New Chaperones in PAH DeficiencyProf Martinez11:25 - 11:50
- Being a teenager with PKU; What 18 years old me should have told 13 year old meKaisa Haugen11:30 - 11:55
- PKU and the brain – looking beyond the white matterDr. Christ11:50 - 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, Norway11:55 - 12:20
- Why should patients associations get involved in the European Reference Network for Metabolic Diseases (METAB-ERN)?12:00 - 13:00
- Free OralsChaired by Prof Francjan van Spronsen and Dr Joergensen12:15 - 13:00
- An Holistic Wellbeing Programme for Adults with an IEMLouise Healy (Australian MDDA)12:20 - 13:00
- Lunch13:00 - 14:00
- My PKU story, PKU in RomaniaRoxana Cordea14:00 - 14:30
- The PKU Summer SchoolFlorentina Peric (Croatia)14:00 - 14:45
- Free OralsChaired by Prof Maria Gizewska and K Ahring14:00 - 15:15
- Growing up with PKU on IcelandSigurbjörg Ólafsdóttir14:30 - 14:55
- The Global Association for PhenylketonuriaTobias S. Hagedorn (ESPKU) and Deniz Atakay (Turkey)14:45 - 15:30
- Strategies for Humanitarian Aid and Phenylketonuria: Gaza, Venezuela, Bolivia, refugeesAgata Bak, ASFEMA, Spain14:55 - 15:30
- Discussion15:15 - 15:30
- Coffee Break15:30 - 16:00
- Being a Top Athlete with PKUSimen and Cathrine Myhre16:00 - 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 challengesDr Zori16:00 - 16:30
- Traveling and Living in Other Countries With PKUMarketa Rysalva16:30 - 16:55
- Nutritional resemblences between PKU and Tyrosinemia type IProf McDonald16:30 - 16:55
- Chronic ConfidenceLouise Healy - Australian MDDA16:55 - 17:45
- Neurofunctional resemblences between PKU and Tyrosinemia type IW van Ginkel16:55 - 17:20
- Any Other Business17:00 - 18:00
- DiscussionChaired by Ahring and Prof Gizewska17:20 - 17:35
- Patients Meet Professionals18:00 - 19:00
- Buffet Dinner19:00 - 21:00
Saturday
- Breakfast07:30 - 08:30
- Tyrosinemia Type IDr. Bliksrud08:45 - 09:10
- Breastfeeding in PKU and Tyrosinemia Type IMrs. Motzfeldt, RD09:10 - 09:35
- Experiences With PegvaliaseDr. Zori09:35 - 10:00
- Coffee Break10:00 - 10:30
- Can PKU and Tyrosinemia Type I Help Each Other ?Prof. van Spronsen10:30 - 11:00
- New Insights Into PKU and the BrainDr. Christ11:00 - 11:30
- ESPKU - Information Gap - Inspiration To Go Home With11:30 - 12:15
- Discussion12:15 - 12:45
- Closing Ceremony12:45 - 13:00
- Lunch13:00 - 14:00
- Tour to Trondheim14:00 - 18:00
- Ballroom Dinner19:30 - 22:00
