Chennai: “It is imperative that the Tamilnadu government addresses the needs of rare disease patients. A comprehensive approach to facilitate speedy treatment is the need of the hour. Patients who have submitted applications are awaiting treatment and are hopeful that the State government will take necessary steps in right direction,” said Lysosomal Storage Disorders Support Society (LSDSS) State coordinator, Raja.
Leading experts have emphasised on the need for creating awareness about Mucopolysaccharidoses (MPS) as a rare disease, its symptoms and the requirement to support the MPS community-at-large.
In a press release, Mediscan clinical genticist – HOD, Dr Sujatha Jagadeesh, said, “Enzyme Replacement Therapy (ERT) for MPS has proved to be effective and had a positive impact on the life of a patient. It is necessary to implement the right interventions to ensure that the patients receive treatment so that they do not lead debilitating lives. We have patients who have received treatment and have immensely benefited from it. Efforts need to be made so that the condition can be prevented and if not, it can be treated”