Former Indian President A.P.J Abdul Kalam has called for a coordinated effort at the national-level for more research into understanding rare diseases in the country.
As there were few cases of rare diseases in the country, health ministries did not consider them a public health issue, observed the former President. He was participating in the conference on Raising Awareness on Rare Diseases
at Hyderabad on Friday.
"There is a need for a whole ecosystem consisting of doctors, a registry to record the prevalence of rare diseases, bio-banks, support groups, more research on drug discovery and of course a regulatory
framework. Each component is complex and there is a lot of work ahead," Dr. Kalam pointed out.
A majority of ailments like Amyotrophic Lateral Sclerosis (ALS), muscular dystrophy, congenital heart diseases, sickle-cell anaemia and many more come under the category of rare diseases. Health experts at the conference pointed out that there was also a need to promote development of drugs for rare diseases.
Members of the Indian Organisation for Rare Diseases (IORD), which organised the conference, pointed out that India was yet to adopt a definition for rare diseases. "We do not have trained doctors or diagnostic facilities to identify the ailments. There are no incentives for pharma sector to develop drugs for rare diseases. Also, it's tough to find information on rare diseases for families and even professionals," said IORD president Ramaiah Muthyala.