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Indo-US Organization for Rare Diseases

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Nonprofit Overview

Mission: Our mission is to: • Advocate for the inclusion of the Indian subcontinent in global clinical trials • Connect rare disease patients in India & US with patient advocacy groups, research, clinical trials & international consortia • Collaborate for public health policy development & implementation between US, India & other countries • Bring together stakeholders of rare diseases through national & international conferences • Facilitate cross-border research collaborations for genetic disorders

Target demographics: the rare disease community in India, US, and globally

Geographic areas served: USA, India and worldwide

Programs: 1. Patients Alliance Membership Program, 2. Research Programs, 3. Education & Outreach Programs, 4. International Diversity Rare Advocacy Initiatives, and 5. Roar4Rare

Community Stories

3 Stories from Volunteers, Donors & Supporters


Professional with expertise in this field

Rating: 5

Great organization that is focused on collaboration between USA and India rare disease patient advocacy organizations. IndoUSRare helped make a connection to doctors in India that were aware of my rare disease. This is just the start and networking is key in the rare disease space. IndoUSRare is a great facilitator and just getting started!

Professional with expertise in this field

Rating: 5

The IndoUSrare team brings together years of experience from diverse backgrounds with a passion for helping rare disease patients globally.
Their vision and mission is commendable. Excited to work with IndoUSrare!


General Member of the Public

Rating: 5

IndoUSrare is passionately involved in advocating for rare disease community and bring more focus to it. Their level of commitment to the cause is displayed in their continuous work to improve the lives all in the rare disease community.