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Often neglected, rare diseases now have a collective voice

Often neglected, rare diseases now have a collective voice“Information technology (IT) has emerged as a greatest enabler of recent times. ORDI is determined to leverage IT in serving rare disease cause by being an umbrella organization for information contribution, collection, consumption and propagation on rare diseases. ORDI also serves as a platform that unites, educates and connects rare disease patients, doctors, scientists, volunteers, evangelists and organizations with the help of latest technological breakthroughs.” Ravinandan ME, founder member ORDI quoted.

“Rapid advances in applying molecular diagnostics tools such as next generation sequencing and bioinformatics to diagnose patients worldwide across the human disease spectrum will have a highly beneficial impact in the diagnosis, treatment and management of rare disease patients. ORDI sees exciting real opportunities emerging out of the molecular diagnostics revolution in enabling personalized medicine for rare disease patients in India”, said Dr. Preveen Ramamoorthy, founder member ORDI.

“Our review of the state of rare disease management in India identified the various challenges and opportunities in India (currently under review by a peer-reviewed journal). The need for an umbrella organization to engage all rare disease stakeholders in India became evident. ORDI serves as this common platform to initiate open engagement among and strengthen the unified voice of rare disease stakeholders in India.” continued Dr. Harsha Karur Rajasimha, founder member ORDI “We are very encouraged by the enthusiasm and support of several national and international rare disease organizations for our mission. Rare Genomics Institute (RGI) represents one of our early partners in USA. RGI is helping to facilitate crowd funding for genomic-based research to help undiagnosed and economically disadvantaged patients with rare disease in India. Several Indian disease-specific patient advocacy organizations and biotech industry bodies have confirmed their collaboration with ORDI.” – he concluded.

Source: http://www.biospectrumindia.com/biospecindia/news/209365/often-neglected-rare-diseases-collective-voice/page/3

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