通过儿童文学和音乐提高圣菲利波综合症的认识
Raquel Marques1, Rodrigo Carlson2, Guilhain Higonnet3
1Patient organization, Associação Sanfilippo Portugal, Lisboa, Portugal.
Endocrine, metabolic & immune disorders drug targets
|December 19, 2023
概括
儿童文学和音乐提供了一种新的方式来提高罕见疾病的认识. 这项倡议包括一本关于桑菲利波综合征的双语书籍和歌曲,促进包容性和资助研究.
科学领域:
- 医学 社会科学 医学社会科学
- 公共卫生传播 公共卫生传播
- 儿科罕见病 儿科罕见病
背景情况:
- 罕见疾病带来了重大挑战,包括诊断延迟和有限的治疗机会.
- 提高公众和医疗保健提供者的意识对于改善患者的治疗结果和倡导政策变革至关重要.
- 当前的宣传活动经常利用社交媒体和筹款活动.
研究的目的:
- 通过儿童文学和音乐引入一种用于罕见疾病的补充战略,以提高公众参与度和意识.
- 促进对罕见病患者及其家属的包容和同情.
- 通过创意媒体销售来为罕见疾病研究筹集资金.
主要方法:
- 开发一本双语 (葡萄牙语/英语) 儿童书籍,详细介绍桑菲利波综合征患者的生活.
- 创建伴奏歌曲和音乐视频,专业录制和制作.
- 本书和歌曲由合作组织翻译和改编成巴西葡萄牙语和法语.
- 多道广告包括社交媒体,传统媒体,学校和书展.
主要成果:
- 超过800本书出售给个人和公司.
- 音乐视频和采访获得了超过1200次浏览.
- 销售收入直接支持圣菲利普波基金会的研究.
- 国际合作通过翻译材料扩大了覆盖范围.
结论:
- 儿童文学和音乐可以成为提高不同受众罕见病意识的有效工具.
- 这个倡议成功地吸引了公众,促进了包容性,并为罕见疾病研究提供了财政支持.
- 创意材料的跨文化适应增强了罕见病宣传的全球影响力和影响力.
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