IndoUSrare is a humanitarian non-profit 501(C)(3) tax-exempt public charity organization based in the US, which addresses the unmet needs of diverse patients with rare diseases globally. With an initial focus on the Indian diaspora, their goal is to build cross-border collaborations to connect stakeholders of rare diseases in low- and middle-income regions—such as India—with their counterparts and clinical researchers in the US. This would allow to improve the diversity of clinical trial participants, accelerate research and development, and improve equitable access to life-saving therapies to diverse populations of rare disease patients.
Indo-US Organization for Rare Diseases (IndoUSrare) is a 501(C)(3) tax-exempt non-profit organization focused on accelerating therapies for rare diseases by building collaborative bridges between the USA and the Indian subcontinent for education, advocacy, & research.
Why is this important?
We believe bridging the eastern and western silos will be a critical catalyst in accelerating the next generation of therapies for rare and complex genetic diseases. Our mission is to educate, empower, and advocate for patients with rare diseases in the US, India, and globally by fostering collaborations & filling critical gaps for the rare disease community towards accelerating diagnostics and therapies.
- 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 the Indian subcontinent.
- Most of the large-scale long-term investments leading to the discovery and development of novel therapies happen 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.
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.
Board Of Directors
Harsha K. Rajasimha
Frank J. Sasinowski
M.S., M.P.H., J.D.
Our Advisory Board Members
President, Lead America Inc., Washington DC
Stephen Groft, Pharm.D.
Board Director, ICORD,
Retired Director, NIH Bethesda, MD
Akkaraju Sarma, MD, Ph.D., FAAFP
Ellis Island Medal of Honor 2016 Recipient, Pennsylvania Resident
Core Management Team
Arockia Jayaraj, Ph.D.
Post Doctoral Research Scholar, Dallas area
Director of community engagement, Greenville, SC
PhD student in Experimental and Clinical Pharmacology at University of Minnesota
Srinivas Seshadri and Rekha Narayan
Directors of Roarforrare, SF Bay area