About Us

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IndoUSrare fills a critical gap for the global rare disease communities' common goal of accelerating the research and development of diagnostics and therapeutics because:

  • 97% of drug discovery and development happens outside of the Indian subcontinent. 
  • ~23% of the World's population lives in the Indian subcontinent.
  • Patient identification and recruitment into clinical trials is the biggest barrier in the development of therapies.
  • A majority of the FDA or EMA approved drugs are not commercialized in the low- and middle- income regions such as Indian subcontinent. 
  • Most of the large-scale long-term investments leading to the discovery and development of novel therapies happens in the Western World.
  • Recent trends indicate that most of the "low-hanging fruits" for novel drugs have been exhausted and novel therapies for rare diseases will require innovative solutions outside the traditional process. 
  • Most of the biomedical and clinical research databases are filled with predominantly data of Caucasian origin. This needs to be updated with data from the genetically diverse population from the Indian Subcontinent. 
  • Progress in the 21st century will require global cooperation with a particular emphasis on the Indian subcontinent. 

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Our History

Founded in 2019 with a group of community leaders with a long history of serving the rare disease community in different capacities. The group saw the need for global cooperation between the East and the West as a driver of new therapies of the 21st century. Orphan Drugs are largely funded by and developed in the Western world by engaging only 10% of the world's population. Once approved by the FDA, these treatments are sought by patients globally who may not be able to access or benefit from the drugs designed without being tested on diverse patients representative of the World's population. 


We saw the need for building collaborative bridges of hope between the Eastern and Western worlds to accelerate discovery and development of novel diagnostics and therapeutics for the global rare disease community.

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Our Mission

Our mission include:

  1. Encouraging the inclusion of the Indian subcontinent in global clinical trials or enable access to global trials as an option for an estimated 70 million patients living with rare diseases in India.
  2. Connecting patients living with rare diseases in India and USA with patient advocacy groups, with research, clinical trials and international Consortia such as IRDiRC, RDI, Globalgenes, NORD, RARE-X and UDNI.
  3. Collaborate for public health policy development & implementation such as Rare Disease Policy and Orphan Drug Policy between USA, India and other countries.
  4. Connecting stakeholders of rare diseases together by organizing national and international conferences.
  5. Facilitate cross-border research collaborations for genetic disorders.

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A Critical Gap to Fill for the Rare Disease Community

A personal note from the Founder

Hi, I am Harsha Rajasimha, Founder and Chairman of IndoUSrare. My first encounter with a rare disease was in 2004 analyzing the next-generation sequencing (NGS) data of bacterial and viral genomes including the Corona Virus. Later in 2010, while I was a Bioinformatics Data Scientist at the neurobiology, neurodegenerati

Upcoming Events

03/19/2020 (Thursday)

Cure GPX4 Research Conference

8 AM PDT - 9 PM PDT

Hyatt Regency Seattle, 808 Howell Street, Seattle, Washington 98101

Event Details

03/19/2020 (Thursday)

Cure GPX4 Research Conference

The conference is organized by Sanath and Ramya, parents of Raghav, a boy affected by an ultra rare disease caused by mutations in the gene ...

Event Details

8 AM PDT - 9 PM PDT

Hyatt Regency Seattle, 808 Howell Street, Seattle, Washington 98101