Pompe India > News > Possible Rare-Disease Fund Brings Hope

Possible Rare-Disease Fund Brings Hope

Mr Kenneth Mah and his wife Patricia with their children Chloe and Cayden. Nine-year-old Chloe has Pompe disease, which currently has no cure and can be fatal. Her treatment now easily reaches $40,000 a month.ST PHOTO: BENJAMIN SEETOR

Mr Kenneth Mah and his wife Patricia with their children Chloe and Cayden. Nine-year-old Chloe has Pompe disease, which currently has no cure and can be fatal. Her treatment now easily reaches $40,000 a month.ST PHOTO: BENJAMIN SEETOR

Caregivers and medical professionals have hailed last week’s announcement that a fund could be set up for children with rare and costly diseases.

However, they also expressed caution, saying the fund must be sustainable and widened in scope.

Mr. R. Rajakanth, executive director of patient advocacy group Rainbow Across Borders, said: “The focus on children is good because they are our future, but they will grow up, so we should have a fund that also focuses on young adults.

“Once you have therapy in place, that means the child’s quality of life increases. The next step is to have continual treatment, which needs sustainable funding,” he said.

Senior Minister of State for Health Chee Hong Tat announced the possibility of setting up the fund last week, as the Ministry of Health (MOH) reviews how to better support children with rare diseases and their families.

Rainbow Across Borders estimates that there are 2,000 to 3,000 rare disease patients in Singapore. No official numbers are available.

Click here to read more.

Highslide for Wordpress Plugin