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“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.”


Chromosomal Anomalies

Duchenne Muscular Dystrophy (DMD)

Fragile X Syndrome

Inborn Errors of Metabolism

Marfan Syndrome


Osteogenesis Imperfecta (OI)

Prader Willi Syndrome

Spinal Muscular Atrophy