Rare Disease Day 2024: IndoUSrare's Frontline Efforts in Tackling Global Inequities
Feb 29, 2024
Indo US Organization for Rare Diseases (IndoUSrare) has always been a steadfast ally to rare disease patients, and Rare Disease Day 2024 will be no exception. Beyond honoring these individuals on February 29 through online and in-person events, IndoUSrare will be addressing the enduring challenges faced by the rare disease community: the high costs of treatment, gaps in research and development, diagnosis complexities,…. Read More
Review of methods for estimating the prevalence of rare diseases
Feb 17, 2024
One of the main challenges in rare diseases is the unavailability of reliable estimates of prevalence and incidence. The lack of epidemiological data makes planning for therapeutic and management options challenging. Methods for estimating the prevalence and incidence of rare and genetic diseases primarily rely on the availability of accurate national patient registries or databases of birth defects…. Read More
Transforming Rare Disease Research: AI, Diversity, and Cross-Cultural Collaboration
Jan 28, 2024
In the realm of clinical trials and rare disease research, the intersection of Artificial Intelligence (AI) and Machine Learning (ML) holds the promise of transforming patient recruitment, data collection, and analysis. However, the current landscape is marked by challenges, particularly the lack of diversity in patient populations and datasets…. Read More
A Roadmap to Better Rare Disease Clinical Trials: 3 Tips for Effective Engagement with Patient Advocacy Groups
Jan 3, 2024
In rare disease research, companies like IndoUSRare are exploring effective strategies such as establishing clinical research sites in countries with a higher incidence of specific rare diseases. This approach, coupled with the utilization of AI-enhanced tools for clinical trial management and incorporating non-profit organizations as facilitators, provides alternative pathways for engaging patient groups,…. Read More
Indo US Bridging Rare Summit Heralds a New Era of Cooperation for Rare Diseases Orphan Drugs Development
Nov 6, 2023
The FDA’s Commissioner, Dr. Robert M. Califf, recently visited India and shared his opinion on India’s Unique Opportunity and Important Responsibility as the Pharmacy to the World. The Inaugural 2-day Indo US Bridging RARE Summit was held on Oct 29 and 30, 2023 at George Mason University in Arlington, VA. The organizing committee led by Dr. Harsha Karur Rajasimha at the Indo US Organization for Rare Diseases (IndoUSrare),…. Read More
IndoUSrare Announces Bridging RARE Summit to Combat Rare Diseases by Fostering Cross-Border Collaborations, Data Sharing, and Clinical Trials
Oct 11, 2023
With an increasing number of U.S. biopharmaceutical firms feeling the financial constraints imposed by the Inflation Reduction Act (IRA) and subsequently shutting down or suspending their research programs in the rare disease domain, hundreds of millions of patients in both the U.S. and India face the grim prospect of not receiving a breakthrough treatment for their condition within their lifetimes…. Read More
Unpacking the Implications of AI in Healthcare
Sep 20, 2023
We all know AI (artificial intelligence) offers huge opportunities and huge risks for various industries, many of which we have discussed here on the blog. Today, let’s unpack what this will mean for one specific vertical market: healthcare. I have great hope for AI. But with great technology comes great responsibility. And as much as I do not want to encourage more…. Read More
Breaking Barriers: Access to Treatment for Rare Diseases in India
July 10, 2023
The World Health Organisation (WHO) defines rare diseases as debilitating, lifelong disorders with a prevalence of less than one per 1,000 persons. They include autoimmune disorders, congenital malformations, inherited cancers, and a few endemic infectious diseases that have very low prevalence. Many of these diseases are genetic and can manifest at any age, from infancy to adulthood…. Read More
Doctor highlights need for patient registry for rare diseases
June 27, 2023
While attending the 2nd international conference on ALS/MND (Amyotrophic lateral sclerosis/Motor neuron disease), Dr Harsha Rajasimha stressed the need for a patient registry for ALS and other rare diseases in India.Dr Harsha is the founder and executive chairman of the Indo-US Organization for Rare Diseases. With 195 clinical trials for ALS underway, an ALS registry…. Read More
Doc stresses need for patient regist
June 23, 2023
There is an urgent need for a patient registry for ALS and other rare diseases in India, said Dr Harsha Rajasimha, founder and executive chairman, Indo US Organization for Rare Diseases, on Thursday “Patient registries are the foundation for understanding the disease and its progression. They can also help enrol patients for clinical trials,” he said….. Read More
Tackling Rare Disease in India
June 05, 2023
Patients with rare diseases often lack adequate access to treatment due to a lack of awareness and medicines. Rare diseases include congenital malformations, autoimmune disorders, lysosomal storage disorders, thalassemia, muscular dystrophies, some forms of cancer, and certain endemic infectious diseases with a very low prevalence, among others. About 80% of rare diseases have a genetic cause….. Read More
Navigating the Challenges of Rare Disease Research with Dr. Harsha Rajasimha on BioTalk
May 15, 2023
Join us for an enlightening episode of BioTalk with Rich Bendis as we explore the pivotal role of patient registries in rare disease research and treatment. Our guest, Harsha Rajasimha, MS, Ph.D., CEO of Jeeva Informatics Solutions and Founder and Executive Chairman of IndoUSrare, shares his extensive experience in clinical genomics data science and precision medicine….. Read More
Global Registries Could Change the Lives of Hundreds of Millions of Rare Disease Patients Everywhere
March 20, 2023
Clinical trials and effective treatment protocols rely on comprehensive data on rare disease demographics and treatments. Rare diseases affect hundreds of millions worldwide, but data collection has been haphazard and isolated within individual countries. The U.S.-based humanitarian organization IndoUSrare is leading a corporate alliance, leveraging technology and refining the procedures necessary to help patient groups and sponsors create global patient registries that can accelerate clinical trials, ultimately saving millions of lives….. Read More
The Future of Rare Disease Care Depends on Thinking Globally
January 23, 2023
Restricted cross-border collaborations among governments, biotech companies and scientists severely curb the speed at which treatments for rare diseases could emerge. Clinical trials for rare disease treatments find it hard to recruit participants in the U.S. “There might only be a few patients in the United States for some rare diseases, and they are likely already enrolled in a trial. Researchers have to go outside the U.S. to find and recruit patients for new therapeutic programs,” ….. Read More
Addressing Massive Health Inequities on Rare Disease Day
February 22, 2022
February 28 marks International Rare Disease Day. While many improvements have been made in clinical trials for rare diseases, the drug development process is still too slow, expensive, and not accessible for most patients – particularly in low-and-middle income countries (LMICs) such as India. Dr. Harsha Rajasimha, Founder and Chairman of IndoUSrare, explains the need for increased global collaborations for accelerating rare disease clinical trials, access to these, and patient access to treatments….. Read More
Political Squabbles Slow Drug Development for Rare Diseases
September 06, 2022
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 …. Read More
Harsha Rajasimha's Interview On Blue Cloud TV
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
June 22, 2022
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
July 2021
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
March 26, 2021
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
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Assessing the Rare Disease Landscape in India
August 31, 2020
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
April 20, 2021
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
August 13, 2014
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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 ofJeeva Informatics, a leading AI and digital health company focused on decentralized clinical trials…. Read More.
Rare Leader: Harsha Rajasimha, CEO, IndoUSrare
February 6, 2020
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
January 3, 2020
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
December 10, 2020
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.
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