– By Neelam M Kachhap
The rare diseases causes a range of physical, cognitive and developmental disabilities and occurs in about one in 10,000 live births
Recently Rare Disease Day was observed by the Indian Society for Clinical Research (ISCR). The event held at Bengaluru aimed to raise awareness by educating people through media. Among those attending were Prasanna Shirol, Founder Member, Organisation for Rare Diseas India (ORDI), Vikas Sharma, Member, Ethics Council, Indian Council for Clinical Research, Premroop Alva, from Haemophilia Society, Bangalore and author Ramgopal Vallath. “There are over 70 million patients in India who suffer from more than 7000 rare diseases. Yet there is no supportive therapy,” said Shirol.
“In India we consider a disease rare if it affects 100 people per 100,000 population, but given the large population the absolute numbers are significant for rare diseases to receive quick and urgent attention,” said Sharma.
The rare diseases causes a range of physical, cognitive and developmental disabilities and occurs in about one in 10,000 live births. The disorder can result in a number of medical issues, including less resrictive to completely dilapidated conditions.
Sharing his experience vallath who suffers from Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) said, “A majority of patients in India cannot afford the current line of treatment nor is there an option to access clinical trials for these diaeases in India.” He was able to participate in a stem cell trial for CIDP in US after