The world is looking to India for its contribution to improve the lot of patients suffering from rare diseases by making use of the huge human resources available in the country, said experts on the eve of the Second National Conference on ‘Rare Diseases – Raising Awareness’ being organised by the Indian Organisation for Rare Diseases at NAC Convention Hall here on Sunday.
International Conferences on Rare Diseases and Orphan Drugs (ICORD) President John Forman and the Canadian Organisation for Rare Disorders (CORD) president Durhane Wong-Rieger are some of the distinguished speakers who will address the conference, which will be attended by 400 delegates that will include those suffering from rare diseases, patient support groups, caregivers, policy makers and pharma companies.
Addressing the media on Saturday, Ms. Wong-Rieger said during her travels in various countries, she was often asked as to what was the contribution of India, which was quite strong professionally, industrially and in the service sector, in reducing the enormous burden caused by rare diseases.
“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. Rare diseases cause more number of deaths than the more common ones like cancer and cardio vascular diseases,” she added.
She said small countries like Uganda, Malaysia, 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.
Mr. Forman said that by focusing on improving the welfare of patients with rare diseases through better knowledge, research and care was the need of the hour. “A definite way of dealing with them was to strive to provide universal health care,” he added. The Indian Organisation for Rare Diseases spokesperson M. Ramaiah said rare diseases affected one among 10 people. Approximately 30 per cent of children with these debilitating diseases will not live to see their fifth year, while 80 per cent of them are genetic.
Member of the AP Medical Council Kamineni Pattabhiramaiah said the council was one of the partners in conducting the conference. He said India did not even have a definition for rare diseases. The conference aims at promoting awareness among patients of rare diseases.
