Updated registry of congenital adrenal hyperplasia at the north pediatric referral centre of Vietnam

Dũng, Vũ Chí; Thảo, Bùi Phương; Ngọc, Cấn Thị Bích; Khánh, Nguyễn Ngọc; Dat, Nguyen Phu; Hoan, Nguyen Thi; Mai, Do Thanh; Craig, Maria E.

doi:10.1186/1687-9856-2015-s1-p49

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“…Translation of CLAN’s model to type 1 diabetes (2007) and osteogenesis imperfecta (2011) helped raise the profile of paediatric endocrinology as a medical specialty in Vietnam, and the Vietnamese Pediatric Endocrinology Society was established shortly afterwards. Members of the Vietnamese Pediatric Endocrinology Society now actively engage and lead in regional and international professional meetings, and publish on CAH and diabetes in peer review journals [ 53 , 57 , 58 , 59 , 60 , 61 ].…”

Section: Resultsmentioning

confidence: 99%

We All Have a Role to Play: Redressing Inequities for Children Living with CAH and Other Chronic Health Conditions of Childhood in Resource-Poor Settings

Armstrong

Yap²,

Chan-Cua

et al. 2020

IJNS

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CLAN (Caring and Living as Neighbours) is an Australian-based non-governmental organisation (NGO) committed to equity for children living with chronic health conditions in resource-poor settings. Since 2004, CLAN has collaborated with a broad range of partners across the Asia Pacific region to improve quality of life for children living with congenital adrenal hyperplasia (CAH). This exploratory case study uses the Knowledge to Action (KTA) framework to analyse CLAN’s activities for children living with CAH in the Asia Pacific. The seven stages of the KTA action cycle inform a systematic examination of comprehensive, collaborative, sustained actions to address a complex health challenge. The KTA framework demonstrates the “how” of CLAN’s approach to knowledge creation and exchange, and the centrality of community development to multisectoral collaborative action across a range of conditions, cultures and countries to redressing child health inequities. This includes a commitment to: affordable access to essential medicines and equipment; education, research and advocacy; optimisation of medical management; encouragement of family support groups; efforts to reduce financial burdens; and ethical, transparent program management as critical components of success. Improvements in quality of life and health outcomes are achievable for children living with CAH and other chronic health conditions in resource-poor settings. CLAN’s strategic framework for action offers a model for those committed to #LeaveNoChildBehind.

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