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Genet Res (Camb). 2014 Aug 13;96:e009. doi: 10.1017/S0016672314000111.

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

Author information

1
Organization for Rare Diseases India,No 10, 4th Main Road, # 2 (Ground Floor), Jaladarshini Layout, Bangalore - 560054India.
2
Developmental Vascular Biology Program and Zebrafish Drug Screening Core,The Medical College of Wisconsin,8915 W. Connell Ave, Milwaukee, WI 53226,USA.
3
Center for Rare and Neglected Diseases,University of Notre Dame,Notre Dame, IN 46556,USA.
4
Rare Genomics Institute,4100 Forest Park Ave, Suite 204, St. Louis, MO, 63108,USA.
5
Department of Medical Genetics,Kasturba Medical College, Manipal University,Manipal,India.
6
Centre for Human Genetics,Biotech Park, Electronics City (Phase I), Bangalore 560 100,India.
7
Foundation for Research on Rare Diseases and Disorders,C252, Kandasamy Salai, Periyar Nagar, Chennai 600082,India.
8
Narayana Nethralaya,#121/C, Chord Road, 1st 'R' Block, Rajajinagar, Bangalore - 560 010,India.
9
Voisin Consulting Private Limited,#1, Hara House, 2nd Floor, Gutte Anjaneya Temple Road, Hosur Main Road, Wilson Garden, Bangalore - 560027,India.
10
Department of Pathology,St. John's Medical College and Hospital,Bangalore - 560034India.
11
Ixora Biosciences Pvt Ltd,Institute of Bioinformatics and Applied Biotechnology,Biotech Park, Electronic City Phase-1, Bangalore - 560100,India.
12
Sir Ganga Ram Hospital,Rajinder Nagar, New Delhi - 110060India.

Abstract

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.

PMID:
25579084
DOI:
10.1017/S0016672314000111
[Indexed for MEDLINE]

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