Organisation for Rare Diseases India - History, Vision and Mission .
ORDI was founded to address the many challenges in the management of rare disease in India. A lack of awareness about rare disease even among doctors means that a diagnosis can often take many years. The cost of diagnosis and treatment can also be prohibitively expensive. In the absence of a national government policy surrounding rare disease, there is no push for the development of orphan drugs, the very medicines that can provide relief for patients with a rare disease.
There are numerous disease-specific patient advocacy organizations in India, including groups like the Down Syndrome Federation, the Pompe Foundation, and the Lysosomal Storage Disorders Support Society. However, until now, there has been no group serving as the collective voice of and advocate for patients with rare diseases throughout the nation. ORDI was formed to address the unmet needs of patients with rare diseases in India. It will serve as an umbrella organization for patients with rare diseases and other stakeholders throughout the country. The ORDI team consists of experts in genetics, molecular diagnostics, drug development, bioinformatics, communications, information technology, patient advocacy, and public service.
We aim to empower patients with rare diseases and their families in India with access to national and international resources to improve their quality of life.
We strive to catalyze the rapid development and delivery of affordable diagnostics and treatments for rare diseases through innovative collaborations and partnerships among stakeholders to benefit patients with rare diseases in India.