Rare Disease Patient Registry, Treatment Clinic soon in Kerala

Thiruvananthapuram: The Kerala government is planning to launch a registry for rare diseases and set up a treatment clinic in Kozhikode, State Health Minister Veena George announced on Friday.

Speaking after inaugurating a workshop for experts in rare disease treatment here, George said the government aims to prevent rare diseases as its primary objective.

She said a rare disease treatment clinic will be established in Kozhikode this year.

The government is making efforts to bring affected children back to life, the minister said.

According to the PTI report, "The registry for rare disease patients in the state will become a reality this year," George said.

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According to her, 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.

"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, reports PTI.

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

S A T Hospital has been designated as a Centre of Excellence for rare diseases, reflecting Kerala's commitment to enhancing healthcare for rare disease patients.

Noting that Kerala is the state with 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, pediatricians, and medical college doctors across Kerala, according to an official release.

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