Our Objectives
Rare Diseases Patients Helpline and Helpdesk: ORDI runs a national rare disease hotline (+91 8892 555 000) to hear the needs of rare disease patients. 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 rare disease patients 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 rare disease patients 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 rare disease patients 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.
Company Details
- Employees
- 17
- Founded
- -
- Address
- Banglore, Karnataka 560029 , In
- Industry
- Non-Profit Organizations
- Website
- https://ordindia.in/
- Keywords
- Bangalore.
- HQ
- Banglore, karnataka
- Competitors
- Indo US Organization for Rare Diseases (IndoUSrare), National Organization for Rare Disorders, Race for 7, Institute for Stem Cell Science and Regenerative Medicine (BRIC-inStem), BAI JERBAI WADIA HOSPITAL FOR CHILDREN - BJWHC, National Society of Genetic Counselors, Tata Institute for Genetics and Society, India, Indian Council of Medical Research (ICMR), Centre for Chronic Disease Control (CCDC), AIIMS Guwahati.
Organization For Rare Diseases India Questions
Organization For Rare Diseases India's website is https://ordindia.in/
Organization For Rare Diseases India's LinkedIn profile is https://in.linkedin.com/company/ord-india
Organization For Rare Diseases India has
17 employees.
View email and phone details for 17
employees at Organization For Rare Diseases India.
Organization For Rare Diseases India's industry is
Non-profit Organizations
Organization For Rare Diseases India's top competitors are
Indo Us Organization For Rare Diseases (Indousrare),
National Organization For Rare Disorders,
Race For 7,
Institute For Stem Cell Science And Regenerative Medicine (Bric-Instem),
Bai Jerbai Wadia Hospital For Children - Bjwhc,
National Society Of Genetic Counselors,
Tata Institute For Genetics And Society, India,
Indian Council Of Medical Research (Icmr),
Centre For Chronic Disease Control (Ccdc),
Aiims Guwahati.
Organization For Rare Diseases India's categories are Non-profit Organizations
Organization For Rare Diseases India's founding year is 2013
