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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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Disability Tax Credit Starter Template for Spreadsheet
(English)
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Author(s): CanPKU+; Chute, Tanya
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Rating:
No Rating
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Description: This is a document that will receive revisions over time. It's constantly changing based on what we learn from other applications. We appreciate you keeping us up to date on the progress of your application so we can learn from your journey too.
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Excel
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Why should I get genetic testing?
(English)
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Author(s): NORD, NPKUA
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Rating:
No Rating
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PDF
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Courageous Parents Network
(English)
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Author(s):
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No Rating
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Link
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The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses
(English)
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Author(s): Global Genes, National Alliance for Caregiving
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Description: The Circle of Care Guidebook is intended to help Caregivers navigate through the varied experiences and challenges of rare and serious medical conditions, guided by the insights, achievements, and learnings of other caregivers and experts. The extensive array of topics covered in this Guidebook (nearly 100) underscores the many aspects of life and care that are impacted when caring for a child with a rare disease. Fortunately, there are a wide variety of helpful resources and organizations available to support and direct Caregivers, many of which are also highlighted in this document.
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PDF
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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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No Rating
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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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Your Nutritional Monitoring for metabolic diseases - Tyrophed
(English)
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Author(s): https://tyrophed.com/#
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Description: This application is an initiative of Mrs. Lydia St-Gelais, mother of little Édouard suffering from tyrosinemia. The application was named in honor of little Édouard (ED) and aims to help parents of children or patients with metabolic diseases like Édouard. This application is specially designed to track tyrosinemia, phenylketonuria, maple syrup urine disease and urea cycle disease. This tool will facilitate the daily monitoring of nutritional intake and leave you more time for what really matters!
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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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Rating:
No Rating
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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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Patient PKU Pediatric Registry in Canada
(English)
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Author(s): CanPKU+
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Rating:
No Rating
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Starting School or Day Care with HCU
(English)
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Author(s): CanPKU+;; Colter, Melanie; Mozdzen, Samantha; Chute, Tanya
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Rating:
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