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Summary: Health Canada’s new Canadian Clinical Trial Search Portal makes it easier to find clinical trials authorized in Canada by condition, treatment, location, recruitment status and more. For people living with rare metabolic disorders and their families, it provides a simpler way to discover research opportunities taking place closer to home.
Summary: Research following adults with MSUD found that executive and adaptive functioning can affect education, employment, health-care transition and independent living, even among people receiving modern metabolic care. Newer findings also highlight the wide range of adult experiences and the need for more intentional support as people with MSUD transition from pediatric care into adult life.
Summary: A small study in children with MSUD explored whether ready-to-use liquid valine and isoleucine could provide a more practical alternative to traditional amino acid supplements. Published in 2026, the findings suggest the liquid products were well tolerated and may help simplify supplementation, although the study was small and the results should be considered exploratory.
Summary: RareKids-CAN is inviting youth with rare diseases and caregivers to share how they search for and use medication-related information. The study aims to identify gaps in current resources and help shape clearer, more useful pharmacology education for rare-disease families across Canada.
Summary: A rare diagnosis is important information, but it is not the whole story. Use CanChild’s F-Words for Child Development to introduce your child’s strengths, relationships, interests and hopes to their school team.
Summary: Un diagnostic rare est une information importante, mais il ne raconte pas toute l'histoire. Utilisez les « Mes mots préférés » de CanChild pour présenter à l'équipe scolaire les forces, les relations, les intérêts et les aspirations de votre enfant.
Summary: This article is presented in English. The article comes from PubMed.
Authors/Auteur: Rafael Garrett, Sara Pickett, Melinda J Peters, Khadija Belhassan, Adam S Ptolemy, Roy W A Peake
Cet article est presente en anglais. L'article provient de PubMed.
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