“There are so many people in India that even patients with rare diseases can be found in sufficient numbers to conduct good scientific research”

Michael Hauser, a Duke professor of medicine and ophthalmology, who collaborates with an eye institute in Hyderabad, India to study a childhood form of glaucoma, was quoted in a recent article published on the Duke website about how Global Research can harness Domestic benefits. To prove his point, it was also mentioned that Hauser’s team in Durham were able to identify 75 patients with primary congenital glaucoma – a major form of childhood blindness that occurs rarely (with an approximate ratio of 1 in 10,000 infants); while his counterparts in Hyderabad, were able to identify more than 600 in the same period.

India, one of the world’s most populated nations at an estimated 1.21 billion people,  faces numerous healthcare challenges, and it is understood from Prasanna Kumar Shirol, Founding member of the Organisation of Rare Diseases India (ORDI), that rare disease patients in India need most help in getting access to treatment options and information about the disease they are suffering from.

Download our latest interview transcript with ORDI here

Basic healthcare needs in India are at a tolerant scale and as the country moves towards economic progress and stability, there is hope that special need patients like those suffering from rare diseases, would be able to access orphan drugs and rare disease treatment options in the near future. Reimbursement for orphan drugs in India has not become a reality and there is currently also no legislation or policy for orphan drugs at this time.

ORDI seeks to provide rare disease patients in India with a platform where there could be exchange of ideas, connectivity between local and international doctors, and ultimately education for other patients in India. To find out more about the rare diseases landscape in India, and learn more about how ORDI overcomes the lack of government support for rare diseases outreach through partnerships with international organisations and support groups, you can join us at World Orphan Drugs Asia 2014. Download our programme brochure for more details.