Call to provide treatment to children with rare disease

Chennai: “With state-of-the-art equipment, Institute of Child Health & Children Hospital (ICH&HC) lab is working as a referral centre for diagnosis of various rare and genetic diseases. ICH&HC is constantly working towards the welfare of people affected with rare diseases,” said
ICH & HC Director, Dr A T Arasar Seeralar.

He was speaking at an event aimed in spreading information about Lysosomal Storage Disorders (LSDs) and other rare disorders. Egmore Institute of Child Health and Hospital for Children with support from Lysosomal Storage Disorders Support Society (LSDSS) organised the rare disease awareness event here Saturday.

“We have received 27 patient applications. After reviewing them we have already sent to the State Health Ministry for further evaluation,” he said.

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, a press release said.

“Tamilnadu government should immediately take steps to provide palliative and treatment facilities to the identified children. Also should provide available treatment for the children who have been approved by the State technical committee,” urged LSDSS honorary secretary Manjit Singh.

“The Tamilnadu 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 government has programmes for various diseases. However in the case of children with rare diseases, they are yet to get the proper attention. Therefore, we are requesting the government to provide treatment to patients,” said senior advocate V Ramesh.

NT Bureau