GEORGE TOWN: The Malaysian Rare Disorders Society (MRDS) has revealed that about five of 20,000 babies risk being born with rare diseases, said president Datuk Hatijah Ayob.
She said rare disorders were diseases caused by chronic genetic factors with the potential to cause death, due to environmental or other unknown reasons.
She said knowledge on rare diseases in the country was still limited; as such, they were often dubbed as odd conditions.
“The role of MRDS is to assist and advise families with children with rare disorders to seek specialists for appropriate treatment,” Hatijah told reporters at the ‘Rare Disease Day’ held in the Penang General Hospital here yesterday.
There are more than 5,000 types of rare diseases.
Among the rare disorders are brittle bone disease (ostergenesis imperfecta), Duchenne Muscular Dystrophy (DMD), Prader-Willi syndrome and chromosome abnormality
The two-day exhibition, beginning Feb 27, was organised by MRDS, in conjunction with World Rare Disease Day which is celebrated by more than 60 countries to raise public awareness of rare disorders.
Apart from the exhibition, MRDS also sold its own publication entitled, ‘Rare Journey Of Love’, priced at RM20, relating to the experiences of 10 families coping with rare diseases.
MRDS was established in 2004 with the assistance of the Genetic Unit of the Universiti Malaya Medical Centre.
As a voluntary organisation, MRDS hopes to hold information-sharing programmes with families of children with rare diseases, with specialists and government representatives.
Those interested in getting to know MRDS can visit its website at www.mrds.org.my. — Bernama