ISLAMABAD: World Thalassemia Day will be observed across the globe on Thursday (today) under the theme of “Together for Thalassemia: Uniting Communities, Prioritising Patients”.

It is worth mentioning that thalassemia has become a silent epidemic in Pakistan, with an estimated 100,000 children suffering from thalassemia major, a preventable but life-threatening blood disorder.

Each year, 5,000 to 9,000 children are born with the condition, primarily due to low public awareness, cultural practices such as cousin marriages, and the lack of universal premarital screening.

Despite over 10 million Pakistanis carrying the thalassemia gene, premarital screening remains non-mandatory, and widespread stigma continues to hinder progress.

ChildLife Foundation, which has provided 14 pediatric emergency rooms and a network of over 300 Telemedicine Satellite Centers in partnership with the government, has called for urgent nationwide reforms, including mandatory premarital screening, safe transfusion infrastructure, and public education campaigns to raise awareness and reduce the disease burden.

According to a statement, in 2024 alone, more than 8,400 children with known or newly diagnosed thalassemia were treated in ChildLife ERs, often arriving in critical condition with severe infections, dangerously low hemoglobin levels, or iron overload complications—all consequences of late diagnosis and lack of routine care.

“Our ERs are often the first and only point of care for children with thalassemia,” said Dr. Ahson Rabbani, CEO of the foundation. “It is a tragedy that we are treating the preventable consequences of a system in need of urgent reform. We must shift from reactive care to preventive action.”

As part of the global ‘Patients First’ campaign, foundation has urged policymakers, healthcare professionals, and communities to come together under the banner of ‘We Are One’ to create a future where no child suffers from a preventable condition, and every child with thalassemia can survive and thrive.

Published in Dawn, May 8th, 2025