Thalassemia is a genetic blood disorder due to which patients have to undergo blood transfusion every two-three weeks.
the Thalassemia Patients Advocacy Group, working under Thalassemics India, which is a 30-year-old organisation, was launched here on Saturday, followed by a half-day long seminar.
The group is headed by seven Thalassemia patients working in different fields.
Delhi Deputy Chief Minister Manish Sisodia, NITI Aayog Principal Advisor B. N. Satpathy among others took part in the function.
Sisodia promised that information on Thalassemia would be publicised in all Delhi schools and also assured to organise prevention programmes and meetings.
Anubha Taneja, 26, a Thalassemic patient and one of the seven core members of the group, said that their aim was to engage with the government and to have a say in policy making for the patients.
Taneja said that their demands to the government were free medicines for patients, safe NAAT-tested blood, reservation in government jobs and zero Thalassemic births.
"There's nobody better than us to engage with government as we are Thalassemic patients and we don't have any vested interests," Taneja told IANS.
Members of the group said that the recent inclusion of Thalassemia in the list of disabilities by which they have got reservation in education was a big step forward, but there is a long way to go.
Rakesh Maini, a lawyer, whose two children suffer from Thalassemia, broke down as he said that medicines cost around Rs 50,000 to 60,000 a month for both his children.
"Where will people like us go for such costly medicines? Government should at least make medicines free," Maini told IANS.
Shobha Tuli, Secretary, Thalassemics India, said that blood should be made available without demanding any replacement blood from patients and government should take up awareness drives.
"There has been no proper study done on the extent of Thalassemia in India. Without that how can we do anything to prevent the disease?" she asked.
(This story has not been edited by Social News XYZ staff and is auto-generated from a syndicated feed.)
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