New Delhi, Feb 18: The Foundation for Research on Rare Diseases and Disorders pegs the number of patients in India afflicted with one of more than 7,000 rare diseases at over 70 million.
Attempting to make rare diseases in India diagnosable and treatable, the Organisation for Rare Diseases India (ORDI), an initiative by doctors, organisations and government bodies, was launched Tuesday.
“There is a genetic origin for at least 80 percent of rare diseases, and in 50 percent of cases the onset occurs in childhood. Rare diseases also include rare cancers, autoimmune diseases, congenital malformations and infectious diseases,” said Vijay Chandru, founder member, ORDI.
He added that since a majority of these diseases lack proper diagnosis, ORDI will empower the patients and their families by providing access to national and international resources to ensure a good quality of life.
“This would also mean the development and delivery of affordable diagnostics and treatments for rare diseases through innovative collaborations and partnerships among multiple stakeholders,” he added.
According to health experts, a lot needs to be done at the policy level to address the needs of patients with rare diseases, and that the absence of a budget allocation is a bottleneck in developing a quality healthcare delivery mechanism for rare disease patients in India.
“Patients suffer physically, mentally and financially as families approach various hospitals seeking diagnosis. Even after proper diagnosis, there is little hope for cure. It is in this context, ORDI has an important role to play in pooling together expertise, efforts, and resources to help patients and health professionals share information,” said Prasanna Shirol, founder member.
Co-founder Harsha Karur Rajasimha said the organisation’s review of the state of rare disease management in India identified the challenges and opportunities associated with those.