The Karnataka Vision Group for Biotechnology along with the state's health-related agencies recognizes the need to take a leadership position in the country for the welfare and improved health outcomes of all citizens affected by rare diseases. The group recognizes that the state has strengths in research capabilities and innovation through the application of genomic science and other biotechnologies for effecting substantive health access for rare disease affected communities. This policy has been drafted to be a forward looking and progressive plan for the state to implement through its institutions and partnerships with India's leading biotechnology cluster.
The Organization for Rare Diseases India (ORDI) is positioned as an umbrella organization to address the collective needs of rare diseases community in India. ORDI is positioned as an organization to address advocacy and needs of rare disease patient communities and families. ORDI models itself on rare disease organizations in the US and EU to build on similar lines in India. This position paper outlines the landscape of rare diseases in India and the many challenges in addressing the issue.