Spinocerebellar Ataxias belong to a group genetically inherited neurological disorder which leads to progressive loss of coordination, falls and eventual wheelchair dependence. There are
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
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
Many asked about April. The elder she get, her slow development is more prominent to the public. William Syndrome is still a stranger to many.
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
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
PETALING JAYA: “Penyakit dialami menyebabkan saya tidak dapat bergiat aktif dalam sukan ketika di sekolah walaupun ada keinginan untuk mencuba seperti individu lain. “Namun, saya
KUANTAN: Masih segar di ingatan Mohd Nazrul Mohamed Saat, 34, dan isterinya Zuraida Baharuddin, 36, pemergian anak sulung mereka Nurul Fatin Nadilla 12 tahun lalu
A rare disease is any disease that affects a small percentage of the population and are frequently debilitating to patients. Timely access to the right
On the 28th of February, in conjunction with Rare Disease Day, The Institute for Democracy and Economic Affairs (IDEAS) held a Rare Disease Symposium in
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.
Malaysia Rare Disease communities, especially the children’s, has been embroiled with many day to day challenges for a long time. This website highlights the challenges faced by them, recommended solutions, tribute to Malaysia Rare Disease warriors / heroes, recognition to Malaysia Rare Disease champions, as well collection of media coverage on Malaysia Rare Disease. Ultimately, we desire to bring together NGO’s, government officials, medical professionals, corporates, policy makers, and citizens of Malaysia as one entity to help Malaysia Rare Disease communities, especially the children’s, in best interest of their future so they too could lead near normal life like any other child in Malaysia.
