Thiruvananthapuram: A registry for rare disease patients in the state will become a reality this year, State Health Minister Veena George said on Friday. Speaking after inaugurating a workshop for experts in rare disease treatment, the minister said the government's primary objective is to prevent rare diseases. She said a rare disease treatment clinic will be established in Kozhikode in 2025.

The government is making efforts to bring affected children back to life, the minister said. "The registry for rare disease patients in the state will become a reality this year," Veena George said.

Currently, more than 90 per cent survival rates have been achieved for children undergoing treatment for SMA (Spinal Muscular Atrophy), she said. The state government aims to identify congenital disabilities and ensure specialised treatment for children, she added.

"Kerala is making significant strides in the field of rare disease care. In February 2024, the state government launched the CARE scheme for rare diseases. Enzyme replacement therapy for rare diseases was initiated at S A T Hospital in 2024.

"Currently, 106 patients are receiving expensive treatments. Through the Shalabham project, congenital disabilities in children are identified and treated," Veena George said.

She said the Hridayam project, which focuses on detecting and treating congenital heart diseases, has enabled 7,916 children to undergo heart surgeries. 

Noting that Kerala has the lowest infant mortality rate, George said that advancements in women's education, public health development, the dedication of healthcare workers, and the Renaissance movement have enabled significant progress in the health sector.

The one-day workshop was organised for district medical officers, district programme managers, paediatricians, and medical college doctors across Kerala, an official release read.