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YouCanConnect
(English)
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Author(s):
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Description: A guide for newly diagnosed families
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PDF - English
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ZIP Images
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Pan-Canadian Guidance for Newborn Screening (2025)
(English)
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Author(s): Canada Drug Agency
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PDF
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Toward a Future Pan-Canadian Coordinated Approach
(English)
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Author(s): Canada Drug Agency
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PDF
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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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Oral Health and Rare Disorders
(English)
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Author(s): CanPKU+; Chute, Tanya
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Amino Acids in our Rares
(English)
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Author(s): CanPKU+; Chute, Tanya
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PDF
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PNG
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PNG
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PDF
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Classroom News
(English)
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Author(s): Ajinomoto Cambrooke
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Description: Starting School.
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PDF - English
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Health-Related Quality of Life and mental health of families with children and adolescents affected by rare diseases and high disease burden: the perspective of affected children and their siblings
(English)
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Author(s): Wiegand-Grefe, Silke;Liedtke, Anna; Morgenstern, Lydia; Hoff, Antonia; Csengoe-Norris, Anikó; Johannsen, Jessika;Denecke, Jonas; Barkmann, Claus;Grolle, Benjamin; Daubmann, Anne; Wegscheider, Karl; Boettcher, Johannes
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Description: Advances in genetic and pharmaceutical technology and pediatric care have enabled treatment options for an increasing number of rare diseases in affected children. However, as current treatment options are primarily of palliative nature, the Health-Related Quality of Life (HRQoL) and mental health of this impaired population and their siblings are of increasing importance. Among children and adolescents with rare diseases, those who are technology-dependent carry a high disease burden and are selected as the target population in our study. In a cross-sectional observational design, the children’s HRQoL was assessed with the DISABKIDS (DCGM-37) as well as KIDSCREEN-27, while mental health was assessed with the Strengths and Difficulties Questionnaire (SDQ) by both the affected children, their parents, and siblings.
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PDF - Scientific Paper
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Designing patient-oriented longitudinal disease registries for children with rare metabolic diseases in Canada
(English)
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Author(s): Wyatt A; Adams j; Angel K; Lamoureux; Howie A; Saad A; Butcher NJ; Greenberg C; Hayeems RZ; Inbar-Feigenberg M; Laberge AM; Lacaze-Masmonteil T; McCabe C; Mitchell JJ; Offringa M; Oskoui, Ruth ; Speechley,K; Stockler S , T
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Description: Wyatt A, Adams J, Angel K, Lamoureux M, Howie A, Saad A, Butcher NJ, Greenberg C, Hayeems RZ, Inbar-Feigenberg M, Laberge AM, Lacaze-Masmonteil T, McCabe C, Mitchell JJ, Offringa M, Oskoui M, Ruth C, Speechley K, Stockler S, Thavorn K, Schulze A Trakadis Y Wilson K, Chakraborty P, Potter BK, & on behalf of the INFORM RARE Network
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PDF
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Helping Anxious Students Move Forward
(English)
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Author(s): Minahan, Jessica
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Description: Strategic accommodations can help students with
anxiety develop persistence and independence.
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PDF
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