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Carrier Study
(English)
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Author(s): Dr. Justine Keathley
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Description: Are you a Family Member of Someone with PKU? Help to Advance Research! ??
Researchers at the University of Guelph want to better understand if there are potential health and cognitive impacts of phenylalanine consumption (found in high-protein foods/beverages and aspartame) in PKU carriers.
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YouTube
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Why should I get genetic testing?
(English)
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Author(s): NORD, NPKUA
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PDF
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Sibling Support. Org
(English)
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Author(s):
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Description: https://siblingsupport.org/
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Link
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Siblings Canada
(English)
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Author(s): Siblings Canada
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Description: https://canadiancaregiving.org/siblingscanada/
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Link
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Fichier canadien sur les éléments nutritifs (FCÉN) - Recherche par aliment
(English)
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Author(s): Gouvernement du Canada
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Description: Vous pouvez effectuer une recherche d'aliments avec ou sans accents, en lettres majuscules ou minuscules et avec des mots clés complets ou partiels. Les mots clés seront recherchés peu importe leur ordre, partout dans la description. Un espace laissé entre les mots sera interprété comme l'opérateur « et ». Vous pouvez aussi utiliser les opérateur « ou » et « non » pour préciser la recherche. Les mots clés sont cherchés en tant que mots complets ou mots partiels, ce qui veut dire qu'une recherche au singulier trouvera les mots au pluriel. Exemples : a) pomme trouvera aussi pommes, pommette, b) pomme crue (ou pomme et crue) trouvera aussi tous les aliments qui contiennent ces deux mots dont pomme de terre crue, c) pomme ou crue trouvera les aliments qui contiennent l'un ou l'autre de ces mots ainsi que les deux mots présents dans le nom. Pomme non crue trouvera tous les aliments qui contiennent le mot pomme sauf ceux renfermant le mot crue.
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Link
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Canadian Nutrient File (CNF) - Search by food
(English)
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Author(s): Government of Canada
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Description: The food search is case- and accent-insensitive, and keywords used can represent complete or partial words. Keywords will be matched in any order against any part of food descriptions. If more than one keyword is used, they may be separated by a space or any of the operators 'and', 'or', or 'not'. A space is equivalent to the operator 'and'. In all cases, keywords are searched both as whole words and partial words, which means that a singular keyword will also find the corresponding plural forms, and prefixed forms. Examples: a) 'fish' will also find 'Crayfish', b) 'apple raw' (or 'apple and raw') will find all the foods having both keywords anywhere in their description, but also: 'Pineapple, raw', c) 'apple or raw' will find any food having either or both keywords anywhere in the description, while 'apple not raw' will find all instances of 'apple' except where 'raw' is also present anywhere in the description.
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Don’t Call Them Unaffected: The Impact of Rare Disease on Siblings and How to Support Them
(English)
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Author(s): Callari, Manuela - PhD
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Link
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Families With Glass Children Must Not Throw Stones
(English)
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Author(s): Ela, Kurt W, Psy.D.
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Description: https://www.psychologytoday.com/us/blog/decade-of-childhood/202405/families-with-glass-children-must-not-throw-stones
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Tending the Siblings
(English)
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Author(s): Courageous Parents Network
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Description: This pathway will help you: Understand the sibling experience Hear and See the common worries shared by other parents Learn about coping strategies and tools others have used to help their other children, the siblings, cope with having a brother or sister with a serious illness.
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Link
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Understanding the Burden of Classical Homocystinuria (HCU) From the Patient’s Perspective: A Qualitative Study
(English)
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Author(s): Bartke,Danaé; Pokrzywinski, Robin; Clucas, Claudine; Machuzak,Kathy; Pinto, Lionel; Travere
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Description: Qualitative interviews with adult patients, pediatric patients, and caregivers elicited in-depth descriptions of how patients with HCU are affected and burdened by various aspects of their disease experience
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