Kuala Lampur, Sept. 13 -- We were honoured to be invited to an Angelman syndrome family gathering on August 30, 2025. It couldn't be more timely, as the pre-launch of the National Policy for Rare Disease in Malaysia had just taken place three days earlier.

It was a small get-together, a celebration, a baby step in bringing the community together, bound by a big love for the children they fondly call their "Angels".

Named after Dr Harry Angelman who first reported it in 1965, this neurogenetic disorder is included in the 2023 Malaysian Rare Disease List. It is caused by the loss of function on the maternal allele of chromosome 15, particularly the UBE3A gene. Globally, Angelman syndrome is estimated to affect 1 in 12,000 to 20,000 live b...