New Delhi: Delhi High Court has directed the Centre to release Rs. 5.35 crore to fund clinical trials for the treatment of rare diseases like Duchenne muscular dystrophy (DMD), hunter’s syndrome, and various others.
Justice Prathiba M Singh was hearing a batch of petitions praying for directions to provide free treatment of these rare diseases to children as the cost of their medical treatment is very high.
Justice Singh noted that the gravity of the issue of rare diseases is yet to be fully recognised, therefore, with the involvement of the department of biotechnology, Union ministry of health and family welfare, All India Institute of Medical Sciences (AIIMS), the court is monitoring and supervising the treatment of children suffering from rare diseases.
“The court believes that the development of treatment for children with rare diseases should be considered a ‘nationally important project’ due to the enormity of the issues confronting these children”, the single-judge bench added.