VIJAYAWADA: Speakers at the national conference on ‘Rare Diseases - Raising Awareness’ held in Vijayawada, on Sunday, stressed the need for more focus on research for finding remedy for those diseases and at the same time extending financial support to those suffering from such diseases.
Addressing the participants of the conference organised by Indian Organisation for Rare Diseases (IORD) in association with Andhra Pradesh Medical Council, Andhra Pradesh Legislative Assembly Speaker Dr. Kodela Siva Prasad Rao emphasised the need for cohesive and collective effort of government, medical fraternity, pharma companies, NGOs in helping the victims of those rare diseases.
“Though it is the rare diseases they suffer from, when put together they make sizable percentage of the population of the country. But, as there is not much profit, publicity and given the cost involved, everyone is not giving enough attention,” Kodela said.
Himself a doctor, Kodela said there are several rare diseases, that needs a prolonged medical therapy and the drugs are hard to find. “Those drugs available are costly, as the pharma companies do not bother with production of such drugs, since demand for them is not much. However, there is need for research and there is need for extending financial support to such people, as affording treatment at present is a costly proposition,” he said.
Couple of people suffering from Thalassemia and hemophilia explained their plight and stressed the need for government support for their treatment and need for more affordable drugs for the diseases. IORD chairman Venkat Jasti was present at the inaugural session.
NTR Health University vice-chancellor T Ravi Raju also participated.