Govt to set up fund for rare diseases patients

BAGAN SERAI - The government is working towards creating a fund to help patients with rare diseases seek treatment, said Deputy Health Minister Datuk Dr Noor Azmi Ghazali.

He said this was necessary because treatment for rare diseases is expensive and the families of patients usually could not afford it.

"Rare diseases are due to a lack of enzymes in the body,” he said at a press conference after handing over contributions to a rare disease patient, Saffiyya Aisyah Sahrul Asyraf Sharuddin, six, at Bukit Merah Laketown here today.

He said the government would provide assistance if it received reports of patients who could not pay for their treatment.

"The cost includes medicines which are expensive and difficult to get,” he said.

Meanwhile, Saffiyya Aisyah’s mother, housewife Syamimi Athirah Sanusi, 30, said she and her family would try to fulfil the wishes of her only child, who is a terminal patient.

"We accept it as fated that my daughter has six months to live. My daughter has been suffering from muscle cancer since four years old and has already undergone two operations,” she said.

The president of the Northern Region Cancer Children's Friends Association, Maznah Tayib, said the association would fulfil Saffiyya Aisyah's wish to play snow at I-City in Selangor in the middle of this month. - BERNAMA