title: Organization for rare diseases India (ORDI) - addressing the challenges and opportunities for the Indian rare diseases' community.
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.
authors.affiliation: Organization for Rare Diseases India,No 10, 4th Main Road, # 2 (Ground Floor), Jaladarshini Layout, Bangalore - 560054India.
authors.forename: Harsha Karur
authors.initials: HK
authors.lastname: Rajasimha
authors.affiliation: Organization for Rare Diseases India,No 10, 4th Main Road, # 2 (Ground Floor), Jaladarshini Layout, Bangalore - 560054India.
authors.forename: Prasannakumar Basayya
authors.initials: PB
authors.lastname: Shirol
authors.affiliation: Organization for Rare Diseases India,No 10, 4th Main Road, # 2 (Ground Floor), Jaladarshini Layout, Bangalore - 560054India.
authors.forename: Preveen
authors.initials: P
authors.lastname: Ramamoorthy
authors.affiliation: Organization for Rare Diseases India,No 10, 4th Main Road, # 2 (Ground Floor), Jaladarshini Layout, Bangalore - 560054India.
authors.forename: Madhuri
authors.initials: M
authors.lastname: Hegde
authors.affiliation: Organization for Rare Diseases India,No 10, 4th Main Road, # 2 (Ground Floor), Jaladarshini Layout, Bangalore - 560054India.
authors.forename: Sangeeta
authors.initials: S
authors.lastname: Barde
authors.affiliation: Organization for Rare Diseases India,No 10, 4th Main Road, # 2 (Ground Floor), Jaladarshini Layout, Bangalore - 560054India.
authors.forename: Vijay
authors.initials: V
authors.lastname: Chandru
authors.affiliation: Organization for Rare Diseases India,No 10, 4th Main Road, # 2 (Ground Floor), Jaladarshini Layout, Bangalore - 560054India.
authors.forename: M E
authors.initials: ME
authors.lastname: Ravinandan
authors.affiliation: Developmental Vascular Biology Program and Zebrafish Drug Screening Core,The Medical College of Wisconsin,8915 W. Connell Ave, Milwaukee, WI 53226,USA.
authors.forename: Ramani
authors.initials: R
authors.lastname: Ramchandran
authors.affiliation: Center for Rare and Neglected Diseases,University of Notre Dame,Notre Dame, IN 46556,USA.
authors.forename: Kasturi
authors.initials: K
authors.lastname: Haldar
authors.affiliation: Rare Genomics Institute,4100 Forest Park Ave, Suite 204, St. Louis, MO, 63108,USA.
authors.forename: Jimmy C
authors.initials: JC
authors.lastname: Lin
authors.affiliation: Rare Genomics Institute,4100 Forest Park Ave, Suite 204, St. Louis, MO, 63108,USA.
authors.forename: Imran A
authors.initials: IA
authors.lastname: Babar
authors.affiliation: Department of Medical Genetics,Kasturba Medical College, Manipal University,Manipal,India.
authors.forename: Katta M
authors.initials: KM
authors.lastname: Girisha
authors.affiliation: Centre for Human Genetics,Biotech Park, Electronics City (Phase I), Bangalore 560 100,India.
authors.forename: Sudha
authors.initials: S
authors.lastname: Srinivasan
authors.affiliation: Foundation for Research on Rare Diseases and Disorders,C252, Kandasamy Salai, Periyar Nagar, Chennai 600082,India.
authors.forename: Duraiswamy
authors.initials: D
authors.lastname: Navaneetham
authors.affiliation: Narayana Nethralaya,#121/C, Chord Road, 1st 'R' Block, Rajajinagar, Bangalore - 560 010,India.
authors.forename: Rajani
authors.initials: R
authors.lastname: Battu
authors.affiliation: Voisin Consulting Private Limited,#1, Hara House, 2nd Floor, Gutte Anjaneya Temple Road, Hosur Main Road, Wilson Garden, Bangalore - 560027,India.
authors.forename: Rajashree
authors.initials: R
authors.lastname: Devarakonda
authors.affiliation: Department of Pathology,St. John's Medical College and Hospital,Bangalore - 560034India.
authors.forename: Usha
authors.initials: U
authors.lastname: Kini
authors.affiliation: Ixora Biosciences Pvt Ltd,Institute of Bioinformatics and Applied Biotechnology,Biotech Park, Electronic City Phase-1, Bangalore - 560100,India.
authors.forename: Kinnimulki
authors.initials: K
authors.lastname: Vijayachandra
authors.affiliation: Sir Ganga Ram Hospital,Rajinder Nagar, New Delhi - 110060India.
authors.forename: Ishwar C
authors.initials: IC
authors.lastname: Verma
mesh_terms: D006297:Health Services Accessibility / Q000191:economics*; D006801:Humans; D007194:India / Q000453:epidemiology; D009937:Organizational Objectives; D009939:Organizations, Nonprofit / Q000458:organization & administration*; D010344:Patient Advocacy; D035583:Rare Diseases / Q000453:epidemiology* / Q000628:therapy*