Abstract Objective Rare diseases are often underdiagnosed, and their management is frequently complicated by a lack of access to treatment and information about the diseases.
The Covid-19 pandemic is a challenging time for all. Rare Diseases Alliance Foundation Malaysia (RDAFM) fully supports the frontline health professionals in the fight to
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.
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
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
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 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
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.
