THIRUVANANTHAPURAM: The health department will soon launch a comprehensive programme called KARe- Kerala Against Rare Diseases- for treating rare diseases. The programme aims to prevent rare diseases by early detection and treatment with the help of therapies and technical assertive devices, ensuring home care and providing psychosocial support to patients.
“The formation of a psychosocial support group is crucial for the success of the programme. The parents of children with rare diseases have been a major force in developed countries. They can help one another, channel funds through NGOs and influence policy making,” said a health department officer.
The state government has set up an SMA (Spinal Muscular Atrophy) clinic at the SAT Hospital in the Medical College in Thiruvananthapuram in this regard. It was followed by a scheme to provide expensive drugs for rare diseases.