ORGANIZATION FOR RARE DISEASES INDIA City: Bangalore, India Phone : +919980133300
The Organization for Rare Diseases India (ORDI) is a national umbrella organization which represents millions of men, women and children that are affected with rare diseases in India;a section 25 non-profit company in India. ORDI’s overarching goal is to raise awareness on rare disorders which in turn will emphasize the need to articulate early diagnosis, treatment, support and better national policy encompassing rare disorders
RARE DISEASES in India affect more people than the name suggests, in fact 1 out of 20 Indians. The scenario worsens due to lack of early diagnosis along with expensive treatment options, which pose major hurdles in rare disease management.
ORDI was founded with the intention of bringing together the powerful and collective voices of experts in genetics, molecular diagnostics, patient advocacy and other stakeholders.
With the goal of representing the collective voice of all patients with rare diseases in India, ORDI reached out to disease-specific patients advocacy groups (PAGs) inviting them to join hands with ORDI.
Race for 7 is a nationwide Awareness Campaign organized by ORDI in lieu of World Rare Diseases Day, February 29th.
ORDI’s primary vision is for India to have a Holistic Rare diseases policy. Owing to persistent efforts, a national policy on rare disease patients was drafted on 13th January 2020. The collective movement initiated by ORDI with its perseverance has been successful in persuading the government leading to many novel initiatives like “the definition for Orphan drug”, Inclusion of Rare Diseases in Rashtriya Aroghya Nidhi Scheme, Patient registry initiative by ICMR etc.
ORDI is a member with several international non-profit organization focused on rare disease like Global Gene, NORD, EURORDIS, RDI, IRDIRC etc