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Rare disease patients seek government attention and help

Chennai: In the backdrop of Rare Disease Day, Institute of Child Health and Hospital for Children, Egmore ,Chennai with support from Lysosomal Storage Disorders Support Society (LSDSS) organized a rare disease awareness event in Chennai. The aim was to raise awareness about rare diseases, specifically LSDs, and its different aspects and to support the rare diseases community at large. Eminent stakeholders including Dr. A.T. ArasarSeeralar. Director, Institute of Child Health& Children HospitalLSDSS President Manjit Singhand SeniorAdvocate Ramesh V spoke about Lysosomal storage disorders and it’s management and the efforts put in for getting access to treatment .Patients suffering from LSDs and their caregivers were also present at the event.

The event highlighted the state government efforts to address the treatment needs of the Rare disease patients. On September 2017 the Madras High Court ruled in the favor of rare disease patients and directed the state government to initiate treatment on an immediate basis for the affected children in government hospitals and genetic centers. 27rare disease patients had submitted their applications to the state technical committee and awaiting sympathetic response from the Government.

The patients suffering from LSDs often lead chronic, debilitating lives and are not able to do even simple daily tasks. For these LSDs effective treatment can only be facilitated if the diagnosis has been timely. What makes the situation more serious is the fact that the majority of the patients suffering from LSDs are children.

Dr.A.T. ArasarSeeralar. Director, Institute of Child Health& Children Hospital said, “With state-of-the-art equipment, our lab is working as a referral center for diagnosis of various rare and genetic diseases. ICH is constantly working towards the welfare of people affected with rare diseases. We have received 27patient applications at ICH. After reviewing them we have already sent it ahead to the health ministry of Tamil Nadu Government for further evaluation.”

Institute of Child health and hospital for children has set up a prenatal diagnosis facility that will ensure that the birth of afflicted children can be prevented on time.

Tamil Nadu government should immediately take steps to provide palliative and treatment facilities to the identified children. Also provide available treatment for the children who have been approved by the State technical committee” Manjit SinghHonorary Secretary LSDSS urged.

“The Tamil Nadu government needs to understand the urgency to provide treatment to rare disease patients. Despite judicial intervention, the government is yet  to speed up the interim treatment initiation. As a progressive welfare state the Tamil Nadu government has programs for various diseases, however in the case of children with Rare diseases, are yet to get the proper attention. Therefore, we are requesting the government to take responsibility and provide treatment to patients to save the lives of the waiting children” said Senior Advocate, V Ramesh.

The event was also a platform to bring patients and families together to raise their collective voice to seek hope for treatment from the state government.

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