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

机译：印度罕见病组织（ORDI）-应对印度罕见病社区的挑战和机遇

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摘要

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.
机译：为了解决未满足的需求并创造使印度罕见病患者受益的机会，一群志愿者创建了一个非营利组织，名为印度罕见病组织（ORDI; www.ordindia.org）。 ORDI计划代表集体的声音，并倡导印度罕见病患者和其他利益相关者的需求。 ORDI团队成员来自不同背景，例如遗传学，分子诊断，药物开发，生物信息学，通信，信息技术，患者权益和公共服务。 ORDI借鉴了美国众多类似组织，欧盟以及印度特定疾病罕见病基金会的经验教训。在这篇综述中，我们提供了关于罕见病的概况以及活跃于全球和印度这一领域的组织的背景信息。我们讨论了印度应对罕见病的独特挑战，并着重指出了罕见病关键利益相关者的未满足需求。最后，我们确定ORDI的愿景，使命，目标和目的，确定印度医疗保健领域的关键发展，并欢迎社区对我们的方法提出反馈和意见。

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