State’s Advancement in Rare Disease Treatment, Free Growth Hormone Therapy Under KARE Project

News Desk

10 March 2025 03:05 PM

Kerala has initiated free Growth Hormone (GH) therapy under the KARE (Kerala United Against Rare Diseases) project. The initiative aims to detect congenital disorders at an early stage and provide expert medical care to children. GH therapy, which typically costs several lakhs, is now being offered at no cost to patients through this program.

The treatment has commenced at the Sree Avittam Thirunal (SAT) Hospital, part of Thiruvananthapuram Medical College, benefiting 20 children. Among them, 14 are diagnosed with Turner syndrome and six with GH deficiency. A multidisciplinary team conducted a thorough evaluation before initiating therapy.

Rare diseases affect approximately one to six individuals per 10,000 people. Growth hormone, produced by the pituitary gland, plays a vital role in regulating body growth and development, particularly in children and adolescents. It is essential for muscle strength and overall growth. GH deficiency can lead to stunted growth in children and, in adults, can cause muscle weakness, fatigue, and brittle bones. Without timely and scientific intervention, this condition can result in severe physical complications.

The State Health Department launched the KARE project in February 2024 to improve rare disease treatment in Kerala. This initiative focuses on prevention, early detection, medical treatments, alternative therapies, assistive devices, home-based care, and psychological and social support for families.

Under the National Rare Disease Policy 2021, 11 Centres of Excellence have been established across India, with SAT Hospital recognized as one of them. In 2024, the hospital also introduced enzyme replacement therapy for rare diseases. Additionally, as part of the KARE project, 100 children with Spinal Muscular Atrophy (SMA) are receiving specialised treatment.