Similar Posts
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 operations due to birth complications…
Competing to prove a point
NEVER let a medical condition stop you from living life to the fullest. This is the message Sofia Lovi Ramasamy, Nik Norziehana Che Isa, and Nor Athira Sujino want to…
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…
Policy IDEAS No 58 – Improving Access to Orphan Drugs in Malaysia
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 treatment is crucial for effective…
Inclusive education: Disconnect between policy and reality
HIS is an open letter to the minister and Ministry of Education. Inclusive education of children with disabilities is accepted internationally as a standard and right for all children. While…
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 kanak-kanak tetapi apabila diperhati lama…