The high court has asked the union government to release funds to begin clinical trials to treat rare diseases like Duchenne muscular dystrophy(DMD).
The rare disorder affects the muscles, it gets worse with time. The disease is very rare among females. The treatment of the disease is quite expensive and not affordable for the lower middle class. Justice Pratibha Singh was hearing the pleas related to a rare disorder, a plea seeking directions to provide the children with free treatment.
The petitioner informed Justice Singh that a memorandum of understanding (MOU) was signed between the Biotechnology Industry Research Assistance council and Hangen Therapeutics private limited in January 2021. According to that a multi-centric study for therapeutic evaluation with respect to DMD patients will be conducted by Haugen.
The HC however noted as per the agreement 50% of the study would be funded by the Centre while the remaining will come from the company.
