Rare diseases, though individually uncommon, collectively impact millions of people worldwide. Alagille Syndrome (ALGS) is one such rare genetic disorder that affects multiple organ systems, most notably the liver, heart, and skeletal system. As we observe Rare Disease Day, which falls on February 28th, it is an opportunity to raise awareness about conditions like ALGS and highlight the importance of early diagnosis, research, and access to specialized care
One major concern for parents of children with disabilities is the uncertainty of their child's
future after their death, particularly for those with high support needs. In Malaysia, there is a
growing awareness of this issue, but national support mechanisms are still lacking, placing
much responsibility on parents, family support networks, and civil society organizations
(CSOs).
Desiree & Saiqa are mothers raising neurodivergent children. They run an online support group discussion, every month on various topics. These sessions are for parents / caregivers / family members to talk about themselves and their challenges. Join them for…
Caring for a child with autism or special needs comes with unique challenges, including access to education, therapy, and financial support. Fortunately, several government and state initiatives in Malaysia offer financial assistance to help ease the burden on families.
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