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Don’t Call Them Unaffected: The Impact of Rare Disease on Siblings and How to Support Them
(English)
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Author(s): Callari, Manuela - PhD
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Families With Glass Children Must Not Throw Stones
(English)
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Author(s): Ela, Kurt W, Psy.D.
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Description: https://www.psychologytoday.com/us/blog/decade-of-childhood/202405/families-with-glass-children-must-not-throw-stones
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Understanding the Burden of Classical Homocystinuria (HCU) From the Patient’s Perspective: A Qualitative Study
(English)
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Author(s): Bartke,Danaé; Pokrzywinski, Robin; Clucas, Claudine; Machuzak,Kathy; Pinto, Lionel; Travere
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Description: Qualitative interviews with adult patients, pediatric patients, and caregivers elicited in-depth descriptions of how patients with HCU are affected and burdened by various aspects of their disease experience
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The Impact of Rare Disease on Siblings
(English)
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Author(s): RareDisease.Net
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Description: A rare disease diagnosis affects the entire family. When a rare disease touches a child, parents become caregivers. Taking care of the child and maintaining their health may become all-consuming. Uncertainty about the future of the child may loom over the family.1,2
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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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HCY Facts
(English)
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Author(s): Texas Dept of State Health Services
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