Harsha Rajasimha's Interview On Blue Cloud TV

Millions Suffer From Untreatable Rare Diseases While Medical Costs Skyrocket

New studies highlight the devastating economic burden of rare diseases. Impacting about 30 million people in the United States alone, the direct and indirect medical costs of rare diseases approach $1 trillion annually. Meanwhile, individuals living with rare diseases are often misdiagnosed, which prolongs their suffering as they are burdened personally and financially. The U.S.-based humanitarian organization IndoUSrare is leading a corporate alliance to expand access to clinical trials and accelerate solutions… Read More

Political Squabbles Slow Drug Development for Rare Diseases

Political conflicts have stagnated the FDA’s attempts to modernize clinical trials to effectively reflect the global population. Research for rare disease treatments lacks racial and ethnic diversity, while trials remain inaccessible for millions of people worldwide. IndoUSrare advocates for engaging stakeholders of rare diseases in India and those in diaspora from India in the US to broaden the diversity, equity, and access of participants in research and clinical trials… Read More

Families in India Face Ongoing Challenges When Coping With Rare Diseases

October  17, 2022

New studies highlight the devastating economic burden of rare diseases. Impacting about 30 million people in the United States alone, the direct and indirect medical costs of rare diseases approach $1 trillion annually. Meanwhile, individuals living with rare diseases are often misdiagnosed, which prolongs their suffering as they are burdened personally and financially. The U.S.-based humanitarian organization IndoUSrare is leading a corporate alliance to expand access to clinical trials and accelerate solutions… Read More

GAA FAIR Grant award

We are happy to announce that IndoUSrare is a recipient of the Financial Advocacy in RARE Impact Grant sponsored by GlobalGenes.
IndoUSrare will aim to determine the availability and accessibility of various schemes for financial assistance for rare diseases in India, create educational resources based on the findings, and create awareness of available financial schemes among the rare disease community in India…. Read More.

Rare Revolution Magazine

Diversity, access, and Inclusion: How IndoUSrare is addressing these grand challenges by building collaborative bridges for stakeholders of rare diseases between the western world and the Indian subcontinent….  Read More.

Unwinding the open data debate for rare diseases

Data is the new oil. The advancements in AI, data mining, big-data present enormous opportunities to build an open data ecosystem in healthcare to accelerate innovation in every spectrum of the system. Open data is one that can be freely used, reused, shared, and distributed without copyright, patent, or other methods of restriction. However, healthcare data falls within the category of ‘personal sensitive data’ and needs a framework to ensure data privacy and data custodianship…. Read More

Assessing the Rare Disease Landscape in India

Harsha Rajasimha’s first encounter with rare disease came in 2009 as a genomics data scientist working with the National Institutes of Health’s National Eye Institute analyzing next-generation sequencing data sets from inherited retinal disease familial cases…. Read More./

IndoUSrare and RARE-X Conduct Feasibility Study For A Patient-Owned Health Data Collection Program for India

IndoUSrare and RARE-X partnered to understand India’s rare disease landscape and conducted a feasibility study to determine the challenges to creating patient-owned health data registries for international data sharing. The India Feasibility Study Report: Patient-Owned Health Data Registries establishes a scoping document and blueprint for opportunities to support patient-owned data collection in country…. Read More

Organization for rare diseases India

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BuzzBio In Conversation with Dr. Harsha K. Rajasimha, IndoUSrare

BioBuzz recently sat down for a conversation with Dr. Harsha K. Rajasimha, a leading rare disease advocate, the founder of the non-profit, IndoUSrare, and the CEO of Jeeva Informatics, a leading AI and digital health company focused on decentralized clinical trials…. Read More.

Rare Leader: Harsha Rajasimha, CEO, IndoUSrare

My first encounter with a rare disease was about 10 years ago at the neurobiology, neurodegeneration, and repair laboratory (NNRL Chief: Anand Swaroop) at the National Eye Institute at the National Institutes of Health. I was a genomics data scientist (consulting) back then analyzing next-generation sequencing data sets from inherited retinal disease familial cases….Read More.

Announcing IndoUSrare

Hi, I am Harsha Rajasimha, Founder and Chairman of IndoUSrare, an independent non-profit organization focused on helping patients with rare diseases of Indian origin in the USA, India and globally with a vision to build collaborative bridges between the east and the west to accelerate research and development of diagnostics and therapies through education, advocacy, & research…. Read More

Social entrepreneur on a mission to bridge the clinical research divide between the USA and India with advocacy and technology

Dr.Harsha Rajasimha is a rare disease social entrepreneur globally recognized for his work in genomics data science, persistent advocacy, and technology innovations addressing grand challenges facing the estimated 350 Million people suffering from rare diseases world-wide. Harsha earned his bachelor’s degree in computer science and engineering from Bangalore University…. Read More.