http://www.canpku.org/ Articles from Canadian PKU and Allied Disorders Mon, 19 Oct 2026 00:00:00 +0000 en http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=96 Mon, 19 Oct 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=96 Quebec's INESSS has recommended against public reimbursement of Loargys for ARG1 deficiency. Learn what the recommendation means for patients, families and treatment access. http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=97 Mon, 19 Oct 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=97 Health Canada has updated its drug-shortage rules, including earlier reporting of discontinued medications and expanded exceptional importation provisions. Learn why these changes matter for people living with inherited metabolic disorders. http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=99 Mon, 19 Oct 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=99 L'INESSS recommande de ne pas inscrire Loargys, un traitement du déficit en arginase 1, sur les listes de médicaments remboursés au Québec. Découvrez ce que cette recommandation signifie pour les personnes touchées et leurs familles. http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=95 Thu, 01 Oct 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=95 BC PharmaCare is inviting patients and caregivers to share their experiences as part of its review of Sephience (sepiapterin). The deadline is October 27, 2026. Learn why your perspective matters and how to participate. http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=72 Fri, 25 Sep 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=72 Alberta's first Rare Disease Summit identified earlier diagnosis, equitable access to treatment, coordinated care, research, adult care and lived experience as priorities. These issues closely reflect the experiences of our PKU, HCU, MSUD and UCD communities. Now CanPKU+ is looking for Alberta families who want to help turn the conversation into action. http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=70 Tue, 22 Sep 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=70 When Advocacy Becomes Too Much http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=64 Thu, 10 Sep 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=64 CDA-AMC has issued a positive final reimbursement recommendation for Loargys® (pegzilarginase) for eligible Canadians living with Arginase 1 Deficiency (ARG1-D). CanPKU+ participated in the review on behalf of our community, and several concerns raised through our advocacy are reflected in the final recommendation. http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=44 Tue, 28 Jul 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=44 http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=42 Thu, 02 Jul 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=42 This opinion article explores how recent efforts by the United States to reduce prescription drug prices may expose broader challenges within Canada's own drug evaluation and reimbursement system. http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=41 Fri, 12 Jun 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=41 http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=38 Thu, 28 May 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=38 Newsletter, CanPKU+, Community, Advocacy, Research, Education, Sustain http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=39 Fri, 01 May 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=39 Sepiapterin, Sephience, PKU, Phenylketonuria, Hyperphenylalaninemia, PKU treatment, PKU therapy, Phenylalanine-restricted nutritional therapy, Drug reimbursement, Rare disease treatment http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=40 Fri, 01 May 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=40 sépiaptérine, Sephience, phénylcétonurie, PCU, hyperphénylalaninémie, traitement de la PCU, thérapie pour la PCU, thérapie nutritionnelle pauvre en phénylalanine, accès aux traitements, remboursement des médicaments, Agence des médicaments du Canada, http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=20 Wed, 18 Mar 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=20 This article is presented in both English and French. The article comes from Health Canada News Release. Cet article est presente en anglais et en francais. L'article provient d'un communique de presse de Sante Canada. http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=45 Wed, 18 Mar 2026 00:00:00 +0000 From the web CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=45 Santé Canada Le groupe de travail comprendra également des membres provenant de : Certaines associations nationales de l'industrie Certains représentants pharmaceutiques Certaines entreprises de biotechnologie Certains partenaires en réglementation, en politiques publiques et en recherche Le Canada dispose d'un secteur pharmaceutique considérable, qui se classe au 9e rang mondial. Cette industrie représente 2 % des ventes mondiales, génère plus de 80 000 emplois hautement qualifiés, contribue à 14 milliards de dollars à l'économie et investit plus de 2 milliards de dollars par an dans la recherche et le développement. Les entreprises sont conscientes de l'importance du marché canadien et continuent de commercialiser de nouveaux médicaments au Canada. Entre avril 2025 et février 2026, Santé Canada a homologué 56 nouveaux médicaments pharmaceutiques, 23 nouveaux médicaments biologiques, 134 médicaments génériques et 12 biosimilaires. Parmi ceux-ci, 43 contenaient des ingrédients médicinaux qui n'avaient jamais été autorisés à la vente au Canada auparavant. Santé Canada collabore avec l'Agence canadienne des médicaments et l'Institut national d'excellence en santé et en services sociaux à la réalisation d'examens coordonnés dans le but de raccourcir le délai entre les autorisations délivrées par Santé Canada et les recommandations de remboursement destinées aux régimes d'assurance médicaments. Au cours des deux dernières années, ces examens coordonnés ont permis de réduire de plus de 80 % le délai entre une décision réglementaire et une recommandation de remboursement. Ce groupe de travail s'appuiera sur le rapport sur la réduction du fardeau administratif mené par le gouvernement du Canada, dont l'objectif est de réduire les contraintes réglementaires inutiles au moyen d'un système réglementaire plus agile et axé sur le risque, qui s'aligne davantage sur les normes des organismes de réglementation internationaux reconnus, tout en simplifiant la navigation pour les Canadiens et les entreprises. http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=28 Mon, 09 Mar 2026 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=28 This article is presented in English. The article comes from Canada's Drug Agency (CDA-AMC). Cet article est presente en anglais. L'article provient de l'Agence des medicaments du Canada (ACMTS / CDA-AMC). http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=18 Sat, 08 Nov 2025 00:00:00 +0000 CARES - Advocacy/Plaidoyer http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=18 Cet article est presente en francais. L'article provient de Carnet Phénylcétonurie par Tristan. This article is presented in French. The article comes from Carnet Phénylcétonurie by Tristan. http://www.canpku.org/index.cfm?fuseaction=Feature.showFeature&featureID=68 Wed, 24 Apr 2024 00:00:00 +0000 CARES - Advocacy/Plaidoyer 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.