Need for rare disease policy


Daddy’s girl: Sivasangaran playing with his daughter Swathi who is battling a rare disease called Infantile Pompe Disease

PETALING JAYA: Once a week since December 2017, Sivasangaran Ku­­ma­ran will strap his 21-month-old daughter Swathi Nisha Nair in the car seat and make the long drive from Seremban to Hospital Kuala Lumpur.

At the hospital, Swathi gets three vials of drugs injected into her body as part of her enzyme replacement therapy.

Limited time offer:
Just RM5 per month.

Monthly Plan

RM13.90/month
RM5/month

Billed as RM5/month for the 1st 6 months then RM13.90 thereafters.

Annual Plan

RM12.33/month

Billed as RM148.00/year

1 month

Free Trial

For new subscribers only


Cancel anytime. No ads. Auto-renewal. Unlimited access to the web and app. Personalised features. Members rewards.
Follow us on our official WhatsApp channel for breaking news alerts and key updates!

Health , Rare disease

   

Next In Nation

MATTA Fair Penang 2024 kicks off with 300 booths
KKB by-election: MACC to run 24-hour operations room until polling day
Over 200 illegals nabbed in Johor raids
Malaysia looking into legal roadmap to improve child protection, says Azalina
We are not subject of MACC investigation, say two of Mahathir's sons
It was a collective decision, says Zahid on settling suit against Muhyiddin
KKB polls: Four-cornered fight for Selangor state seat
Education institutions founded by MCA to collaborate with more Chinese universities
Man arrested, yaba pills worth over RM12,000 seized
Skywatchers out in force

Others Also Read