Organization for rare diseases India (ORDI) - addressing the challenges and opportunities for the Indian rare diseases' community

In order to address the unmet needs and create opportunities that benefit patients with rare disease in India, a group of volunteers created a not-for-profit organization named Organization for Rare Diseases India (ORDI; www.ordindia.org). ORDI plans to represent the collective voice and advocate th...

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Bibliographic Details
Published in:Genetics Research 2014-01, Vol.96, p.e009-e009, Article e009
Main Authors: Rajasimha, Harsha Karur, Shirol, Prasannakumar Basayya, Ramamoorthy, Preveen, Hegde, Madhuri, Barde, Sangeeta, Chandru, Vijay, Ravinandan, M E, Ramchandran, Ramani, Haldar, Kasturi, Lin, Jimmy C, Babar, Imran A, Girisha, Katta M, Srinivasan, Sudha, Navaneetham, Duraiswamy, Battu, Rajani, Devarakonda, Rajashree, Kini, Usha, Vijayachandra, Kinnimulki, Verma, Ishwar C
Format: Article
Language:English
Subjects:
Health Services Accessibility - economics
Humans
India - epidemiology
Organizational Objectives
Organizations, Nonprofit - organization & administration
Patient Advocacy
Rare Diseases - epidemiology
Rare Diseases - therapy
Research Papers
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Summary:In order to address the unmet needs and create opportunities that benefit patients with rare disease in India, a group of volunteers created a not-for-profit organization named Organization for Rare Diseases India (ORDI; www.ordindia.org). ORDI plans to represent the collective voice and advocate the needs of patients with rare diseases and other stakeholders in India. The ORDI team members come from diverse backgrounds such as genetics, molecular diagnostics, drug development, bioinformatics, communications, information technology, patient advocacy and public service. ORDI builds on the lessons learned from numerous similar organizations in the USA, European Union and disease-specific rare disease foundations in India. In this review, we provide a background on the landscape of rare diseases and the organizations that are active in this area globally and in India. We discuss the unique challenges in tackling rare diseases in India, and highlight the unmet needs of the key stakeholders of rare diseases. Finally, we define the vision, mission, goals and objectives of ORDI, identify the key developments in the health care context in India and welcome community feedback and comments on our approach.
ISSN:0016-6723
1469-5073
DOI:10.1017/S0016672314000111