PUBLICATIONS
POSTERS
WRDD 2023 sudah semakin hampir, tahun ini @officialmrds bersama @gcsocietymalaysia berkerjasama memulakan inisiatif baru dengan menerbitkan siri poster Reality & Hope : Malaysia RD Poster.
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Sebanyak 10 poster mesej disasar akan diterbit sepanjang Februari 2023 dalam kira detik menuju Sambutan Hari Penyakit Jarang Jumpa Sedunia 2023 pada 28 Feb 2023 ini.
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Dalam meyebar luas mesej kempen RD MRDS tahun ini kepada rakyat Malaysia, siri poster ini akan diterbit dalam 4 bahasa iaitu Bahasa Melayu, English, Mandarin dan Tamil.
Guna, Hashtag #realityandhope dan #realitidanharapan telah dipilih menjadi hashtag tambahan disamping #rarediseaseday
#rarediseaseawareness
#penyakitjarangjumpamalaysia
#rarediseasemalaysia dalam kempen WRDD MRDS 2023
BOOKS
“Duchenne Muscular Dystrophy, ‘brittle bone’ disease, Achondroplasia, Ectodermal Dysplasia, Prader-Willi Syndrome.
Strange sounding words but these are actually names of rare disorders affecting some of our fellow Malaysians. A rare disorder is a medical disorder that affects a small number of people and is caused by genetic or environmental factors or by unknown factors.
About 3% to 5% of babies are born with serious birth defects. It is estimated that there are about 20,000 babies born each year with birth defects in Malaysia. Some of these babies have known rare disorders.
Rare Journeys of Love presents 10 extraordinary stories of Malaysian families living with rare disorders. These are heart-warming stories shared by parents of children diagnosed with rare disorders or by patients themselves. Journey with them as they describe how they face the daily challenges of living with rare disorders – with tears, fears and much love.
This book is a message of hope and encouragement for those facing similar challenges. This book serves to raise awareness of rare disorders and to sensitise all to the needs of fellow Malaysians affected by rare disorders.”
If you are interested in purchasing this book, please click the button below
“Zara Shares Her Stripes,” part of the “Inspired By” book series by Alexion and AstraZeneca, focuses on a young girl named Zara who has a rare condition. The story emphasizes the importance of accepting one’s rare disease and finding a supportive community. It is inspired by the real-life experiences of Deja, Kristin, and Anndria, each affected by different rare diseases. The book aims to educate children and families about living with rare diseases in an approachable and empathetic way.
The “Inspired By” book series is produced by Alexion, AstraZeneca Rare Disease.
“Zara Berkongsi Belangnya” – the Bahasa Melayu translation – is translated by the Malaysian Rare Disorders Society.
If you are interested to read this book, please click the button below, please provide your name , email address and contact number.
