Canadian PKU and Allied Disorders - Articles http://www.canpku.org/ Articles from Canadian PKU and Allied Disorders Sat, 26 Sep 2026 00:00:00 +0000 en Calling Youth and Young People with PKU: Help Shape a New Transition Resource http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=74 Sat, 26 Sep 2026 00:00:00 +0000 CARES - Community/Communauté http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=74 Youth and young people living with PKU are invited to become Advisors on a project co-creating a practical virtual resource to support the transition toward adult care. Advisors will share their experiences, priorities and ideas alongside healthcare providers, researchers and patient-community representatives to help ensure the final resource is relevant, engaging and youth-led. Advocacy Has Boundaries: A Reflection Worth Reading http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=70 Tue, 22 Sep 2026 00:00:00 +0000 CARES - Community/Communauté http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=70 When Advocacy Becomes Too Much 2026 Spring Newsletter - CanPKU+ http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=38 Thu, 28 May 2026 00:00:00 +0000 CARES - Community/Communauté http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=38 Newsletter, CanPKU+, Community, Advocacy, Research, Education, Sustain When Rare Disorders Appear on Screen http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=11 Tue, 27 Jan 2026 00:00:00 +0000 CARES - Community/Communauté http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=11 This blog is created in English. Une histoire de PCU | Nathan et la phénylcétonurie: vivre avec une maladie invisible au quotidien http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=23 Mon, 10 Nov 2025 00:00:00 +0000 CARES - Community/Communauté http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=23 Note en francais : Cet article est presente en francais. L'article provient de phenylcetonurie.ca. Auteur : Tristan Audet. English note: This article is presented in French. The article comes from phenylcetonurie.ca. Author: Tristan Audet. A PKU story | Nathan and phenylketonuria: living with an invisible disease on a daily basis http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=24 Mon, 10 Nov 2025 00:00:00 +0000 CARES - Community/Communauté http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=24 This article is presented in English. The article comes from phenylcetonurie.ca. Author: Tristan Audet. Cet article est presente en anglais. L'article provient de www.phenylcetonurie.ca. Rare Diseases in Adults: An Overlooked Health Concern http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=68 Wed, 24 Apr 2024 00:00:00 +0000 CARES - Community/Communauté http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=68 Rare diseases do not end when childhood ends, and some are not diagnosed until adulthood. This article highlights challenges facing adults with rare diseases, including delayed diagnosis, limited awareness among healthcare providers, financial impacts, and missed opportunities for treatment.