To bridge this gap and work as a catalyst that can bring about a change in the manner in which rare diseases are diagnosed and treated, a group of eminent healthcare leaders, NGO's, doctors and government bodies have come together to launch a first-of-its-kind ‘Organization for Rare Diseases' in India, ORDI
India is home to an estimated over seventy million patients affected with one of more than seven thousand rare diseases. The number of patients with known and novel rare diseases is increasing every year and it is estimated that 1 in 20 Indians are affected by one of the seven thousand rare diseases. Due to the inadequate infrastructure or the lack of awareness at various stakeholder levels, rare disease management is growing into a major healthcare concern in India.
There is much to be done at the policy level to address the needs of rare disease patients. The absence of budget allocation for research is a major bottleneck in developing a quality healthcare delivery mechanism for rare disease patients in India. Since there are seven thousand types of rare diseases and each of these diseases affects a very small population there are severe constraints in conducting scientific and clinical research and development of a nationwide newborn screening regimen. This has lead to limited therapeutic and diagnostic modalities for rare disease patients.
Although there have been individual organizations and persons working in the area but the need for a strong collective voice was important for pursuing pending issues with the government.Therefore to address that, the Organization for Rare Diseases India (ORDI) was formally launched by the founding team members in a function held at the constitution club of India on February 18, 2014. The launch ceremony was attended by eminent scientific and medical advisors of ORDI, representatives of the rare disease stakeholders and key opinion leaders in health care policy and adminstration in India.
ORDI's vision is to make rare diseases in India diagnosable and treatable just like other common diseases such as diabetes, breast cancer and cardiovascular disease etc.