{"id":13311,"date":"2018-02-01T15:15:17","date_gmt":"2018-02-01T20:15:17","guid":{"rendered":"https:\/\/observatoireprocheaidance.ca\/caregiving-knowledge-portal\/rare-disease-caregiving-in-america\/"},"modified":"2026-07-09T11:07:33","modified_gmt":"2026-07-09T15:07:33","slug":"rare-disease-caregiving-in-america","status":"publish","type":"knowledge_directory","link":"https:\/\/observatoireprocheaidance.ca\/en\/caregiving-knowledge-portal\/rare-disease-caregiving-in-america\/","title":{"rendered":"Rare Disease Caregiving in America"},"content":{"rendered":"\n<div class=\"et_pb_section_0 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_0 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_0 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_0 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><span data-contrast=\"auto\">This <\/span><b><span data-contrast=\"auto\"><a href=\"https:\/\/www.caregiving.org\/wp-content\/uploads\/2020\/05\/NAC-RareDiseaseReport_February-2018_WEB.pdf\" target=\"_blank\" rel=\"noopener\">report<\/a><\/span><\/b> <span data-contrast=\"auto\">This report (87 pages) presents the results of a survey on the experiences of caregivers supporting a child or adult with a rare disease or condition. Topics covered include caregiver demographics, information sources, use of local services, and the impact of the role on caregiver stress, wellness and other aspects of life.  <\/span><span data-ccp-props=\"{}\"> <\/span><\/p>\n<p><span data-contrast=\"auto\">The report draws on quantitative data from 1,406 caregivers aged 18 and over who reported providing unpaid support in the past year to someone with a rare disease. The data were collected online in fall 2017.  <\/span><span data-ccp-props=\"{}\"> <\/span><\/p>\n<p><span data-contrast=\"auto\">An <\/span><a href=\"https:\/\/www.caregiving.org\/wp-content\/uploads\/2020\/05\/NAC-Rare-Caregiver-Infographic_February-2018.pdf\" target=\"_blank\" rel=\"noopener\"><b><span data-contrast=\"auto\">infographic <\/span><\/b><\/a><span data-contrast=\"auto\">summarizing certain findings is also available.\u202f<\/span> <span data-ccp-props=\"{}\"> <\/span><\/p>\n<\/div><\/div><div class=\"et_pb_module et_pb_button_module_wrapper et_pb_button_0_wrapper preset--group--divi-button--divi-transition--default_wrapper preset--module--divi-button--default_wrapper\"><a class=\"et_pb_button_0 et_pb_button et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-button--divi-transition--default preset--module--divi-button--default\" href=\"https:\/\/www.caregiving.org\/wp-content\/uploads\/2020\/05\/NAC-RareDiseaseReport_February-2018_WEB.pdf%20%20\" target=\"_blank\" data-icon=\"$\">Read the report<\/a><\/div><div class=\"et_pb_module et_pb_button_module_wrapper et_pb_button_1_wrapper preset--group--divi-button--divi-transition--default_wrapper preset--module--divi-button--default_wrapper\"><a class=\"et_pb_button_1 et_pb_button et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-button--divi-transition--default preset--module--divi-button--default\" href=\"https:\/\/www.caregiving.org\/wp-content\/uploads\/2020\/05\/NAC-Rare-Caregiver-Infographic_February-2018.pdf%20%20\" target=\"_blank\" data-icon=\"$\">See the infographic<\/a><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"<p>This report (87 pages) presents the results of a survey on the experiences of caregivers supporting a child or adult with a rare disease or condition. <\/p>\n","protected":false},"featured_media":14217,"parent":0,"template":"","format":[51,52],"meta":{"_acf_changed":false,"footnotes":""},"auteur":[],"organisme":[350,719],"class_list":["post-13311","knowledge_directory","type-knowledge_directory","status-publish","has-post-thumbnail","hentry","organisme-national-alliance-for-caregiving-en","organisme-global-genes-en"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.0 - 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