Rare disease in Malaysia: Challenges and solutions

rarediseasemalaysia
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Caution for rare disease patients

PEOPLE living with rare diseases face many difficulties in getting the diagnosis and care they need. These difficulties are now exacerbated by the Covid-19 pandemic.

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Sharing rare disease data across borders

Those who contracted Covid-19 are experiencing what it’s like to have a condition that is difficult to diagnose without clear treatment options. This is the

Spinocerebellar Ataxia
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Spinocerebellar Ataxia

  Spinocerebellar Ataxias belong to a group genetically inherited neurological disorder which leads to progressive loss of coordination, falls and eventual wheelchair dependence. There are

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The Pompe Family

Last Thursday, April 4th 2019 I received a shocking news that my 43 days old nephew is having a rare disease. He has undergone many

Mawaddah hidap penyakit jarang jumpa
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Mawaddah hidap penyakit jarang jumpa

MAS AHMAH JONID begitu teruja bercerita mengenai anak perempuannya, Mawaddah A. Khalil. Begitulah naluri seorang ibu yang sentiasa bangga dengan cahaya matanya di sebalik berdepan

Tulang rapuh bukan halangan
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Tulang rapuh bukan halangan

PADA satu majlis yang dihadiri baru-baru ini, mata terpandang pada satu susuk tubuh kecil yang duduk di atas kerusi roda. Sekali imbas, nampak seperti seorang

Penghidup wajah
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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