63,095 babies
Screened since July 2013
More than 63,095 babies had been screened in JHF-Newborn Metabolic Screening Programme since July 2013.
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Secondary
Every parent anticipates the birth of a healthy baby. However, a minority of newborns (1 in 4000) may suffer from ‘inborn Errors of Metabolism’ (IEM), which if left undetected and untreated, could significantly affect the long term health and development of the child. To this end, The Chinese University of Hong Kong (CUHK) now offers an expanded newborn screening program which can provide early detection of an extensive range of metabolic diseases previously untested for in Hong Kong.
每個父母都期望一個健康寶寶的誕生。然而,少數的新生寶寶 (1/4000) 有可能患上被稱為「先天性代謝缺陷」的疾病 (Inborn Errors of Metabolism; 簡稱代謝病或IEM),若未能及早被發現和治療,可以對寶寶的健康和發展帶來嚴重的長期影響。為此,香港中文大學現提供一項新生兒篩查計 劃,旨在早期廣泛診斷出這類未曾在香港地區測試過之代謝病。
CONTACT THE Centre of Inborn Errors of Metabolism
The Chinese University of Hong Kong
For interested parents, please contact us at 5600 1970 during office hours within 7 days after baby is delivered.
有意參加計劃的家長, 請於寶寶出生後7天之內在辦公時間致電5600 1970聯絡我們。
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ADVOCATING THE IMPORTANCE OF NEWBORN SCREENING
IN 2016, JHF launched Vital Step Newborn Screening for Inborn Errors of Metabolism — a pilot programme. Based on the results of this research, the Hospital Authority now provide free newborn screening in all public hospitals.
ART IN YOUR LIFE | YOGA IN YOUR HEART
ART IN YOUR LIFE | YOGA IN YOUR HEART (AIYL) IS A UNIQUE BILINGUAL EXPRESSIVE ARTS THERAPY AND YOGA THERAPY PROGRAM FOR CHILDREN AND YOUTH WITH RARE DISEASES AND SPECIAL NEEDS, INSPIRED BY RENOWNED CONTEMPORARY ARTISTS.
JHF piloted this program in 2013, running a mobile program across different SEN schools in Hong Kong, with the main goal of improving the quality of life for children with rare diseases and special needs.
Children with rare genetic diseases seldom have opportunities to participate in activities that develop their physical, emotive and social aspects of their lives on a therapeutic basis. Many rare genetic diseases are misdiagnosed and children are often classified as having other special needs including cerebral palsy or autism. For this reason, our program includes children from qualified low income families who have special needs including cerebral palsy, autism and other physical or intellectual disabilities.
For the 2019-2020 academic year, AIYL is proud to share a 30-week program to take place alongside a school year at the Cornwall School — a government funded day and residential school. Many of the children here have profound and multiple physical and learning disabilities.
Our team visits twice each week to deliver targeted therapies. Yoga and expressive arts are by their very nature mediums for proactive self-expression. Children get better acquainted with their bodies and how to use different parts of their bodies to communicate visually, linguistically/para-linguistically, and somatically.
The sessions are designed to help students become aware of different body parts, build connections on how to move and use them proactively. Connect body parts to certain functions and then be able to use them through a variety of modes (linguistic and paralinguistic) to self-express. Yoga sessions include music, breathing, postures, relaxation, mindfulness and meditation adapted to suit each child’s individual capacity.
When the children feel calmer yet alert, we introduce expressive arts through a variety of mediums such as sounds, textures, rhythms and visuals, allowing children to experience and then proactively create their own interpretations from them. Children participating in the program create individual art, music or rhythm works. The children are provided with instructions on how to use these experiences as tools for mindfulness.
The grant was awarded to JHF by Swire Trust. JHF is collaborating with YAMA Foundation (an official sub-grantee offering the yoga therapy expertise).