Rare Disease Week - Reflections with A Parent of Rare Disease Child

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Penghidup wajah

Petaling Jaya: “Mungkin hanya segelintir orang kurang upaya (OKU) yang bekerja sebagai jurusolek di sini (Malaysia) namun kerjaya ini tidak asing lagi bagi masyarakat di luar negara. “Malah, saya percaya…

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Ideas to help rare disease community

In conjunction with this year’s World Rare Disease Day at the end of this month, the Malaysian Rare Disorders Society (MRDS) is collaborating with PuakPayong to organise a “Mingle and…

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Spinal muscular atrophy – making hope real for the families

Spinal muscular atrophy (SMA) is a degenerative disease that occurs in about 1 in 11,000 live births which means about one baby is born with SMA almost every week in…

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HOW CAN I ACCESS GENETIC TESTING FOR MY CHILD?

To access genetic testing you must contact your GP or specialist clinician who will arrange a referral for you to an NHS Regional Genetics Service. Here we explain what will…

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Parents are pillars of strength for these rare disease patients

Azhar Talib and Norliza Mohd Din were delighted when their fourth child was born in 2000. Nur Lydia Afrina was a picture of contentment as she slept most of the…

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Rare Disease Week – Reflections with A Parent of Rare Disease Child

Penghidup wajah

Ideas to help rare disease community

Spinal muscular atrophy – making hope real for the families

HOW CAN I ACCESS GENETIC TESTING FOR MY CHILD?

Parents are pillars of strength for these rare disease patients

Bukan Kumpul Dana Semata-mata

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