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Health Ministry urged to approve drug to help patients with spinal muscular atrophy
The Health Ministry should approve a drug named Spinraza that can help people with spinal muscular atrophy (SMA), said WeCare Journey co-founder Yap Sook Yee. “On December 23, 2016, the…
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 norm for people living with…
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…
Sambutan Hari Penyakit Jarang Jumpa
Program bual bicara memfokuskan isu kewanitaan, kanak-kanak dan keluarga keseluruhannya dengan menyediakan pelbagai topik menarik.
IDEAS Launches Whitepaper on Rare Disease Policy in Malaysia
The Institute for Democracy and Economic Affairs (IDEAS) has launched a Whitepaper on Rare Disease Policy in Malaysia, by Professor Dr Thong Meow Keong and Dr Azlina Ahmad Annuar from…
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…
