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Doctors and researchers told to focus on tackling rare diseases
AP Legislative Assembly Speaker Dr Kodela Siva Prasada Rao called upon doctors and researchers to create awareness among the patients about the spread of rare diseases which has been on the rise these days across the globe.
AP Legislative Assembly Speaker Dr Kodela Siva Prasada Rao called upon doctors and researchers to create awareness among the patients about the spread of rare diseases which has been on the rise these days across the globe.
The Legislative Assembly Speaker was in the city on Sunday to participate in the second National Conference on ‘Rare Diseases-Raising Awareness’ organised by the Indian Organisation for Rare Diseases (IORD) in association with AP Medical Council at NAC Convention Center.
Speaking on the occasion, Siva Prasada Rao said that incidences of deaths caused by rare diseases were high than the more common ones like cancer and cardio vascular diseases.
He underlined the need for promoting coordinating efforts to tackle rare diseases by creating awareness and improving the system of diagnosis and treatment.
International Conferences on Rare Diseases and Orphan Drugs (ICORD) President John Forman said that “Rare diseases affect less number of people, but more than 7,000 such diseases have been identified, and they mounted a huge burden on the world.
Many diseases are caused by genetic defects. It is not only the diseases of the poor that’s get neglected but those with small patient populations are also neglected. He said India did not even have a definition for rare diseases.
The drug that is used to treat rare diseases is called orphan drug. Multiple languages, culture and host of other factors contribute to ineffective communication, he said.
Canadian Organization for Rare Disorders (CORD) President Durhane Wong-Rieger said that Government of India has no public policy, lack of trained doctors or diagnostic labs.
Small countries like Uganda, Malaysia and South Korea were able to tackle rare diseases like thalassaemia, haemophilia and sickle cell anaemia by increasing awareness and improving the system of diagnosis and treatment.
She wanted the Government of India to focus on formulating effective policies to fight on rare diseases and provide incentives for pharma sector to develop drugs for rare diseases.
About 400 delegates that will include those suffering from rare diseases, patient support groups, caregivers, policy makers and pharma companies were also present on the conference.
