- Rare Diseases Patients Helpline and Helpdesk: ORDI runs a national rare disease hotline (+91 8892 555 000) to hear the needs of patients with rare diseases. ORDI will setup a dedicated helpdesk with the goal of enabling patients, access to information and resources to guide them through the process of diagnosing and dealing with the rare conditions affecting their health and quality of life.
- ORDI develops and maintains a public website, a patient portal, organizes awareness campaigns, and an annual rare disease conference in India.
- Organize sponsored clinics that are at no cost to the patients with rare diseases by inviting national and international medical and research experts for selected rare diseases. The scope for this is enormous as there are 7000+ rare diseases and 70+ million patients in India. We will identify 5-10 diseases for the first couple years and coordinate clinics for them in metro cities with attendance by surrounding rural patients to the extent possible.
- Rare disease patient registry: Design, develop, maintain and make available, a registry of patients with rare diseases in India. Initially, this registry could be developed for a single or a group of rare diseases and eventually replicated to accommodate all rare diseases. This registry would be utilized for identifying patients for free/sponsored clinics, enrollment into clinical trials, broadcast important announcements, maintain patient informed consents to participate in special clinical research programs, etc.
- Biospecimen repository (bioBank) for rare diseases research: To enable the preservation of and utilization of biospecimens related to patients with rare diseases in India, ORDI shall provide a biobanking facility and enable access to researchers investigating rare diseases in India. These specimens are shared according to applicable laws and standard operating procedures (SOPs) relevant to human subjects research.
- Funding program for rare disease researchers in India: At least five competitive research awards based on external review to winning proposals. The biospecimens in the ORDI Biobank and the ORDI patient registry would be made available as resources to the grantees of these awards. ORDI will also catalyze relevant international collaborations for these grantees.
08 / Jul / 2017
01 / Nov / 2017