News / Media

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

December 12, 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

December 12, 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

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