Around 200 doctors and scientists participated at a conference in the city to talk about ways to improve the quality of life of existing patients and prevent the birth of Thalassemia major children.



The two-day conference which started on Saturday was organised by the National Thalassemia Welfare Society (NTWS) in association with the Department Paediatrics in Lady Hardinge Medical College (LHMC). With more than five crore Indians suffering from Thalassemia gene and approximately 10,000-12,000 new Thalassemia major born every year, there is still ignorance about this serious blood disorder, said Dr JS Arora, the general secretary of NTWS.

He mentioned about the new drug in the pipeline, 'Luspatercept', that will improve Haemoglobin level in Thalassemia patients, saying it will drastically reduce the requirement of blood and iron chelating agents ultimately improving quality of the patient's life. 

Dr Sandeep Soni, Haemato-oncologist, who is doing research on gene therapy in Thalassemia at Lucile Packard Children's Hospital, Palo Alto, CA said, "Gene therapy is designed to introduce genetic material into cells to compensate for abnormal genes or to make a beneficial protein. A gene that is inserted directly into a cell usually does not function. A carrier called a vector is genetically engineered to deliver the genes. The viruses are modified so that they can't cause disease." 

Vinita Srivastava, senior national consultant and coordinator, Blood Cell, National Health Mission in the Ministry of Health apprised the steps taken by the ministry for the management and prevention of Thalassemia and sickle cell disease.

"Prevention is Cure" which is an ideal idiom for Thalassemia, was the emphasis of the conference which highlighted important issues such as Thalassemia management, blood transfusion, latest developments in gene therapy, National Policy of Thalassemia, Benefits of Disability for Thalassemia.