PETALING JAYA: Former prime minister Ismail Sabri Yaakob has urged Putrajaya to revise a RM25 million fund for rare diseases that was tabled in the previous administration’s budget.
“The health ministry could continue what has been planned by the former administration and create a special fund for rare diseases,” Ismail said.
He said his administration had considered the fund as a way to assist families struggling to cope with the bills associated with long-term intensive care.
“If the special fund still exists, it can be used to help people before they have to start crowdfunding.
“It was tabled by former finance minister Tengku Zafrul Aziz in (the first) Budget 2023 before the change in government,” he said after visiting Sufi Syafrina Shafiq, who was diagnosed with a rare spinal muscular atrophy (SMA) type 1 disease, at her house today.
The six-month-old child is dependent on mechanical ventilators and reportedly requires RM9 million for gene therapy and other related treatments for recovery.
“I was informed that many of the SMA type 1 patients only have an expected life span of two years, so I urge everyone to donate to Sufi’s treatment costs,” he said.
Those who wish to assist may contact Sufi’s father, Syafiq Idrus, at 011-5978-7879.
Donations may be made directly into his Maybank account; 562021680453. - FMT
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