Registry of rare disorders needed, says don

  • Nation
  • Friday, 10 Jun 2011

PETALING JAYA: About 20,000 or 3% of all babies born in Malaysia every year have some form of disability, including rare disorders, but there is no data bank with details about their condition.

To better address the problems faced by such babies, the Health Ministry should set up a central registry with details about patients with rare disorders and ensure that the details were kept strictly confidential, said medical geneticist Prof Dr Thong Meow Keong.

“When a child is born with birth defects, his or her parents rarely talk about it because they are ashamed.

“When the babies die, people just accept it as a fact of life. But if we have enough data on those with rare disorders, we can launch a medical investigation to help them,” said Prof Thong at the 1st Malaysia Conference on Rare Disorders and Medical Genetics 2011 here yesterday.

The conference chairman said it was easier to address common health complications such as diabetes and tuberculosis because the relevant data on those affected was available.

“As patients with rare disorders are uncommon, the media tend to be interested in zooming in on the patient's disabilities, which in turn will turn away the parents who are already struggling to cope with their child's condition,” said Prof Thong.

The Malaysian Rare Disorders Society (MRDS) defined a rare disorder as a disease that is observed in less than 4,000 cases.

Its website said that 75% of rare disorder cases were discovered in children, with almost a quarter of them dying before the age of five.

“If we have the numbers and details about those diagnosed with rare disorders, those affected will find strength as a group,” said MRDS president and co-founder Datuk Hatijah Ayob.

She lost two grandchildren to a rare disorder known as Congenital Disorders of Glycosylation Type 1A that prevents normal growth and function of tissues and organs.

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