Rare disease patients gather for the third time appealing for treatment to the state government
BENGALURU: Patients suffering from rare Mucopolysaccharidoses and other rare diseases and their families came together to appeal to the state government for providing treatment on the occasion of International Mucopolysaccharidoses (MPS) Day.
Dr Asha Benkappa, director of Indira Gandhi Institute of Child Health Hospital (IGICH), said at an event organized by Lysosomal Storage Disorder Support Society (LSDSS) and the Organization for Rare Diseases in India (ORDI: “We will provide all assistance to special children and their parents. Government alone can’t do everything as the cost of ERT is exorbitant for each child. Society should come forward and join as a humanity to help and assist these children who are 1 for every 25,000 births.
Dr Meenakshi Bhat, senior clinical genetics consultant at the Centre for Human Genetics, said: “It is very important for days like this to be observed around the country, as they help to increase awareness on the disease amongst the public, doctors and policymakers.”
This was the third gathering of LSDs patients in the city.”Diagnosis and treatment of rare diseases like MPS is a challenge in country like India. Today many children are suffering without treatment and may be many more not even diagnosed. We have been requesting Karnataka government to form a policy for rare diseases at least at the state level and provide access to treatment for confirmed diagnosed patients before it is too late,” said Dr Prasanna Kumar Shirol, co-founder of Organization for Rare Diseases in India (ORDI).