Rare Disease Day India
CENTOGENE is proud to be associated with the Race for 7 event organized by the Organization of Rare Diseases of India. The awareness run on the 28th February morning - Rare Disease Day saw massive participation from people from all walks of life.
Of particular note was the active participation of many patients and families with rare disorders in the run that was in Bangalore's iconic Cubban Park. The event attracted about 2500 participants and was the first of its kind in India. ORDI & CENTOGENE call upon the Government of India to recognize the immense
difficulties faced by patients with rare disorders in diagnosis and treatment. Due to a lack of awareness even in the medical community, many patients are not being diagnosed early enough for effective treatment to be instituted. The patient support groups are calling for a 'Orphan Drug' act along the lines of similar
legislation in the EU & US.
ORDI, founded two years ago in February 2014, addresses the many challenges in the management of rare disease in India. Missing awareness amongst physicians and patients about the nature of rare diseases, its diagnosis, management and therapy options is an ongoing, long-lasting process. ORDI has established in the past 2 years an outstanding network of physicians, affected patients and their families and carers with an extraordinary effort to raise awareness, support the community in its daily work and most
important, educate all involved groups.
CENTOGENE is proud to support ORDI in the organization of the RaceFor7, a charity run that symbolically represents the 7,000 rare diseases with 7,000 people running for 7 kilometers.
Find more information about Race for 7 here.