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