Joining the hidden revolution in rare diseases: working with family support groups

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Joining the hidden revolution in rare diseases: working with family support groups

机译：加入罕见疾病中隐藏的革命：与家庭支持团体合作

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《Archives of disease in childhood》 |2020年第2期|共2页
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正文语种 eng
中图分类儿科学;
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1. Joining the hidden revolution in rare diseases: working with family support groups [J] . Archives of disease in childhood . 2020,第2期

机译：加入罕见疾病中隐藏的革命：与家庭支持团体合作
2. Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support [J] . Matilda Anderson, Elizabeth J Elliott, Yvonne A Zurynski Orphanet journal of rare diseases . 2013,第2期

机译：澳大利亚患有罕见疾病的家庭：诊断经验，医疗服务的使用以及社会心理支持的需求
3. Rare diseases 2030: how augmented AI will support diagnosis and treatment of rare diseases in the future [J] . Annals of the Rheumatic Diseases: A Journal of Clinical Rheumatology and Connective Tissue Research . 2020,第6期

机译：罕见疾病2030：增强AI如何支持未来稀有疾病的诊断和治疗
4. The Status Quo of Rare Diseases Centres for the Development of a Clinical Decision Support System - A Cross-Sectional Study [C] . Jannik SCHAAF, Martin SEDLMAYR, Hans-Ulrich PROKOSCH, Health Informatics Meets Digital Healtd Conference . 2020

机译：稀有疾病中心发展临床决策支持系统的现状 - 横截面研究
5. Rare World: Investigating Social Support in Rare Disease and Common Chronic Illness Communities [D] . MacLeod, Haley. 2018

机译：稀有世界：调查罕见病和常见慢性病社区的社会支持
6. Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate [O] . Julie McMullan, Ashleen L. Crowe, Caitlin Bailie, 2020

机译：支持生活和使用北爱尔兰罕见疾病的人所需的改进：目前的罕见疾病支持被认为是不充分的
7. EUCERD Join Action: working for rare diseases (EJA) [O] . Isidro Glória 2014

机译：EUCERD联合行动：为罕见病工作（EJA）

Joining the hidden revolution in rare diseases: working with family support groups

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