工程师盼唤醒关注溶酶体病症.单骑1千公里请愿
Read more at Sin Chew
工程师盼唤醒关注溶酶体病症.单骑1千公里请愿
Read more at Sin Chew
The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease has released a roadmap detailing three tracks focused on patient and family empowerment, technology, and genetic consultation. All of which…
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 tidak berputus asa dan mencari…
THE Malaysian Alliance of Rare Diseases Foundation takes note of the government’s effort to provide better healthcare coverage for the B40 group through a social health insurance scheme. Although the…
WORLD Rare Disease Day (WRDD) was celebrated last week. An annual commemoration initiated by the European Organisation for Rare Diseases, WRDD was celebrated for the first time on Feb 29,…
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 dengan pelbagai kesukaran hidup. Anak…
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. Many people with rare diseases…