{"id":8550,"date":"2019-07-19T09:28:08","date_gmt":"2019-07-19T09:28:08","guid":{"rendered":"https:\/\/laforcedmd.com\/?p=8550"},"modified":"2022-05-03T18:10:29","modified_gmt":"2022-05-03T18:10:29","slug":"survey-for-canadian-families-living-with-duchenne-muscular-dystrophy","status":"publish","type":"post","link":"https:\/\/laforcedmd.com\/en\/survey-for-canadian-families-living-with-duchenne-muscular-dystrophy\/","title":{"rendered":"Survey for Canadian families living with Duchenne Muscular Dystrophy"},"content":{"rendered":"<p style=\"font-weight: 400;\"><strong>Dear Duchenne Family,\u00a0<\/strong><\/p>\n<h4 style=\"font-weight: 400;\"><strong>On behalf of Stand for Duchenne Canada, Jesse\u2019s Journey and La Force DMD, thank you for your interest in participating in this survey for Canadian families living with Duchenne Muscular Dystrophy (DMD).<\/strong><\/h4>\n<p>&nbsp;<\/p>\n<p style=\"font-weight: 400;\">The purpose of this survey is to gather vital information to submit to Health Canada, describing the impact Duchenne has on the lives of those living with and caring for this rare disease. Currently, there is no way for caregivers and people with DMD to let Health Canada know this.<strong> We feel it is critical that this information is considered when therapies are under review with Health Canada. Currently, there are therapies for DMD approved in Europe and the US that have not yet been approved in Canada.<\/strong><\/p>\n<h4>Learn more on the approval process in Canada<\/h4>\n<p class=\"av-special-heading-tag\" style=\"text-align: left;\"><span style=\"color: #0000ff;\"><a style=\"color: #0000ff;\" href=\"\/?page_id=3494\" target=\"_blank\" rel=\"noopener noreferrer\">How are drugs approved for use in Canada?<\/a> \u00a0\u2022 \u00a0<a style=\"color: #0000ff;\" href=\"\/?p=3274\" target=\"_blank\" rel=\"noopener noreferrer\">The approval process for new drugs<\/a><\/span><\/p>\n<p>&nbsp;<\/p>\n<h4 style=\"font-weight: 400;\"><strong>It\u2019s crucial for our DMD community to help Health Canada understand why we don\u2019t have time to wait for these new treatment options to become available.<\/strong><\/h4>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p style=\"font-weight: 400;\">We request that you complete the survey at your earliest convenience as it will be closing on <strong>August 2, 2019<\/strong>. This survey should take about\u00a0<strong>30 minutes<\/strong>\u00a0to complete. If you are a caregiver for more than one person with DMD, please complete this survey for each.<\/p>\n<p>By agreeing to complete this survey, you consent to allow Stand for Duchenne, Jesse\u2019s Journey and La Force DMD to publish a summary of all the data collected in this survey of which your personal and medical information will be anonymized. <strong>The individual information that we collect from this survey will be kept private.<\/strong><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<blockquote>\n<p style=\"text-align: center;\"><strong><span style=\"color: #0000ff;\"><a style=\"color: #0000ff;\" href=\"https:\/\/connect.impetusdigital.com\/dmd-patient-family-survey\" target=\"_blank\" rel=\"noopener noreferrer\">CLICK HERE TO COMPLETE<\/a><\/span><\/strong><\/p>\n<\/blockquote>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>In addition to this online survey, we are also conducting telephone interviews. The interview is vital for us to collect important additional information about your preferences that we would not be able to collect in this survey. All your personal information will continue to remain anonymous. If you are interested in participating in a 15-minute telephone interview and\/or interested in getting more involved in advocating to ensure the DMD voice is being heard, please send an email to <span style=\"color: #0000ff;\"><a style=\"color: #0000ff;\" href=\"mailto:nicola@duchennecanada.org\" target=\"_blank\" rel=\"noopener noreferrer\">nicola@duchennecanada.org<\/a>.<\/span><\/p>\n<p><strong>On behalf of Stand for Duchenne Canada, Jesse\u2019s Journey and La Force DMD, thank you in advance for your engagement. If you have any questions about this survey, please contact Nicola Worsfold at\u00a0<span style=\"color: #0000ff;\"><a style=\"color: #0000ff;\" href=\"mailto:nicola@duchennecanada.org\" target=\"_blank\" rel=\"noopener noreferrer\">nicola@duchennecanada.org<\/a><\/span>. All conversations will remain confidential.\u00a0<\/strong><\/p>\n<p>&nbsp;<\/p>\n<hr \/>\n<h4><\/h4>\n<h4 style=\"text-align: center;\">Thank you for your interest in participating in this survey for Canadian families living with Duchenne Muscular Dystrophy<\/h4>\n<p>&nbsp;<\/p>\n<hr \/>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-8551 size-medium\" src=\"https:\/\/laforcedmd.com\/wp-content\/uploads\/2019\/07\/logos-300x41.jpg\" alt=\"\" width=\"300\" height=\"41\" srcset=\"https:\/\/laforcedmd.com\/wp-content\/uploads\/2019\/07\/logos-300x41.jpg 300w, https:\/\/laforcedmd.com\/wp-content\/uploads\/2019\/07\/logos-768x104.jpg 768w, https:\/\/laforcedmd.com\/wp-content\/uploads\/2019\/07\/logos.jpg 864w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/p>\n<p style=\"text-align: center;\"><a href=\"https:\/\/duchennecanada.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">Stand for Duchenne<\/a>\u00a0 \u2022\u00a0 <a href=\"https:\/\/www.jessesjourney.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">Jesse\u2019s Journey<\/a> \u2022\u00a0 <a href=\"https:\/\/laforcedmd.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">La Force DMD<\/a><\/p>\n<p>&nbsp;<\/p>\n<hr \/>\n<blockquote>\n<p style=\"text-align: center;\"><strong><span style=\"color: #0000ff;\"><a style=\"color: #0000ff;\" href=\"https:\/\/connect.impetusdigital.com\/dmd-patient-family-survey\" target=\"_blank\" rel=\"noopener noreferrer\">CLICK HERE TO COMPLETE THE SURVEY<\/a><\/span><\/strong><\/p>\n<\/blockquote>\n","protected":false},"excerpt":{"rendered":"<p>Dear Duchenne Family,\u00a0 On behalf of Stand for Duchenne Canada, Jesse\u2019s Journey and La Force DMD, thank you for your interest in participating in this survey for Canadian families living with Duchenne Muscular Dystrophy (DMD). &nbsp; The purpose of this survey is to gather vital information to submit to Health Canada, describing the impact Duchenne [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":8571,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[],"class_list":["post-8550","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-in-the-medias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Survey for Canadian families living with Duchenne Muscular Dystrophy -<\/title>\n<meta name=\"description\" content=\"Thank you for your interest in participating in this survey for Canadian families living with Duchenne Muscular Dystrophy.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/laforcedmd.com\/en\/survey-for-canadian-families-living-with-duchenne-muscular-dystrophy\/\" 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