Bengaluru: Rare disease patients get a resource centre
By Express News Service | Published: 15th March 2018 06:57 AM |
BENGALURU: Opford (Open Platform for Rare Diseases) a rare diseases digital platform was launched on Wednesday by The Centre for Health Ecologies and Technology (CHET) as a part of the Blue Ribbon Rare Diseases Symposium that brought together various rare disease experts, patients, and industry experts at the National Gallery of Modern Art here on Wednesday.
OPFORD is a digital support and online resource centre to provide networking support and digital libraries for rare diseases.
Various problems of accessability were discussed at the conference, like for example, a bone density test for those suffering from osteogenesis imperfecta that costs up to `4,000 is unavailable in government facilities. Archana Ravindra (45) who suffers from the disease said, “Patients have to get a bone density test at least once a year. It is not available in government facilities, let alone free of cost.
Those suffering from dentinogenesis imperfecta need specialised dentists as their jaw bones are weak. I spend `3 lakh to `3.5 lakh at Manipal Hospital for dental services. None of this is available in government facilities.”
Swatantra Banakar, deputy director and chief nodal officer, state blood cell, said that facilities were slowly but surely improving. “CT scanning facilities and MRI scanning facilities are available in every district hospital that cost around `56,000 to `70,000. DNA testing will start shortly,” he said.