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

Harsha Karur Rajasimha, Prasannakumar Basayya Shirol, Preveen Ramamoorthy, Madhuri Hegde, Sangeeta Barde, Vijay Chandru, M. E. Ravinandan, Ramani Ramchandran, Kasturi Haldar, Jimmy C. Lin, Imran A. Babar, Katta M. Girisha, Sudha Srinivasan, Duraiswamy Navaneetham, Rajani Battu, Rajashree Devarakonda, Usha Kini, Kinnimulki Vijayachandra, Ishwar C. Verma

Research output: Contribution to journalArticle

7 Citations (Scopus)

Abstract

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.

Original languageEnglish
Article numbere009
JournalGenetics Research
Volume96
DOIs
Publication statusPublished - 2014

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Rare Diseases
India
Organizations
Patient Advocacy
Molecular Pathology
European Union
Computational Biology
Volunteers
Communication
Technology
Delivery of Health Care

All Science Journal Classification (ASJC) codes

  • Genetics

Cite this

Rajasimha, H. K., Shirol, P. B., Ramamoorthy, P., Hegde, M., Barde, S., Chandru, V., ... Verma, I. C. (2014). Organization for rare diseases India (ORDI)-addressing the challenges and opportunities for the Indian rare diseases' community. Genetics Research, 96, [e009]. https://doi.org/10.1017/S0016672314000111
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. / Organization for rare diseases India (ORDI)-addressing the challenges and opportunities for the Indian rare diseases' community. In: Genetics Research. 2014 ; Vol. 96.
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abstract = "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.",
author = "Rajasimha, {Harsha Karur} and Shirol, {Prasannakumar Basayya} and Preveen Ramamoorthy and Madhuri Hegde and Sangeeta Barde and Vijay Chandru and Ravinandan, {M. E.} and Ramani Ramchandran and Kasturi Haldar and Lin, {Jimmy C.} and Babar, {Imran A.} and Girisha, {Katta M.} and Sudha Srinivasan and Duraiswamy Navaneetham and Rajani Battu and Rajashree Devarakonda and Usha Kini and Kinnimulki Vijayachandra and Verma, {Ishwar C.}",
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Rajasimha, HK, Shirol, PB, Ramamoorthy, P, Hegde, M, Barde, S, Chandru, V, Ravinandan, ME, Ramchandran, R, Haldar, K, Lin, JC, Babar, IA, Girisha, KM, Srinivasan, S, Navaneetham, D, Battu, R, Devarakonda, R, Kini, U, Vijayachandra, K & Verma, IC 2014, 'Organization for rare diseases India (ORDI)-addressing the challenges and opportunities for the Indian rare diseases' community', Genetics Research, vol. 96, e009. https://doi.org/10.1017/S0016672314000111

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

In: Genetics Research, Vol. 96, e009, 2014.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Organization for rare diseases India (ORDI)-addressing the challenges and opportunities for the Indian rare diseases' community

AU - Rajasimha, Harsha Karur

AU - Shirol, Prasannakumar Basayya

AU - Ramamoorthy, Preveen

AU - Hegde, Madhuri

AU - Barde, Sangeeta

AU - Chandru, Vijay

AU - Ravinandan, M. E.

AU - Ramchandran, Ramani

AU - Haldar, Kasturi

AU - Lin, Jimmy C.

AU - Babar, Imran A.

AU - Girisha, Katta M.

AU - Srinivasan, Sudha

AU - Navaneetham, Duraiswamy

AU - Battu, Rajani

AU - Devarakonda, Rajashree

AU - Kini, Usha

AU - Vijayachandra, Kinnimulki

AU - Verma, Ishwar C.

PY - 2014

Y1 - 2014

N2 - 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.

AB - 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.

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U2 - 10.1017/S0016672314000111

DO - 10.1017/S0016672314000111

M3 - Article

VL - 96

JO - Genetical Research

JF - Genetical Research

SN - 0016-6723

M1 - e009

ER -