CENTOGENE to collaborate with Organization of Rare Diseases of India
CENTOGENE is pleased to announce its sponsorship of the Organization of Rare Diseases of India (ORDI). ORDI is a not-for-profit organization founded and advised by key opinion leaders from medicine, patients, industry, government and non-governmental organizations to address the unmet needs in the management of rare diseases in India. There are an estimated 70 million patients of rare diseases in India, most of whom experience long delays in diagnosis and management due to lack of awareness of these conditions even amongst the medical community. ORDI will lead a collaborative effort of healthcare, pharmaceutical, genetics, diagnostics & patient support organizations to improve the quality of life for rare disease patients in India through advocacy and educational efforts.
Harsha K. Rajasimha, MS, PhD, Founder Member, ORDI said, “ORDI’s mission is to engage all stakeholders of rare diseases to converge, debate and collaborate to improve the lives of patients with rare diseases in India. One of the several programs of ORDI involves setting up rare disease care coordination centers (RDCCC) in collaboration with major hospital hubs across India to improve the speed of diagnosis and increase accessibility of treatment options for patients.”
Mr. Prasanna Shirol, Founding Member, ORDI and father of a 14-year old daughter with a rare disease, Pompe. “Centogene is among the first companies to join the ORDI corporate council and support the RDCCC program. We already have five willing hospitals distributed in north and south India to implement RDCCC and the Centogene grant comes at a critical time of need.” We extend an open invitation to the Pharma and Diagnostic industry to support these innovative rare disease programs.
Dr. Sunil Tadepalli, General Manager India, Centogene said “Many people worldwide suffer from rare genetic diseases, but down to the present day the diagnosis comes all too often too late for the patient. As a company with the focus on this subject we are working every day to improve the process of diagnosis making. Besides our daily working routine we are supporting patients and patient organizations worldwide, which have to deal with this difficult matter to make their lives a little bit easier and let them know: You are not alone!.
For more information about the work of ORDI, please contact Prasanna Shirol [Email: firstname.lastname@example.org] or visit ORDI Website at http://www.ordindia.org