Akrutisinha

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The Critical Role of CMC in Bringing New Medicines to Patients

Akrutisinha02 Jul, 2026Health

When we think about what it takes to develop a life-saving therapy for a rare disease, our minds often jump to scientific breakthroughs, clinical trials, or regulatory approvals. Yet behind every medicine that reaches a patient lies a deeply complex, often invisible process: Chemistry, Manufacturing, and Controls, or CMC.

Rare Disease Roadmap Insights from 42 Years of the Orphan Drug Act

Akrutisinha02 Jul, 2026Health

For millions of people living with rare conditions, progress on paper hasn’t always translated into progress at home. The Orphan Drug Act (ODA) of 1983 [1 ]unlocked incentives that transformed drug development for rare conditions — a legislative win that produced new science, new approvals, and new hope.

Raising Awareness for Rare Diseases: Lessons from a Community Library Session

Akrutisinha02 Jul, 2026Health

One of the most important lessons I learnt was the importance of advocacy. In my opinion, advocacy is very important for rare disease patients, as it provides recognition for them and the disease they are fighting, which is often ignored. It also helped me understand the need for policy reform and research funding for these orphaned diseases.

Understanding the Rare Pediatric Disease Priority Review Voucher Program

Akrutisinha02 Jul, 2026Health

For many families, a rare pediatric disease diagnosis brings a difficult reality: not only may there be no approved treatment, but limited understanding of the condition can also make it challenging to access specialized care and support. Because these conditions individually affect small numbers of children, drug companies typically face high costs and limited financial return when developing new therapies.

Medical Innovations in Rare Diseases: What Patients Need to Know

Akrutisinha02 Jul, 2026Health

For the millions of people living with rare diseases around the world, hope has long been a scarce resource. With over 7,000 known rare diseases identified and fewer than 5% having approved treatments, the gap between scientific possibility and patient reality has historically been vast.

Empowering the Undiagnosed IndoUSrare’s Initiatives That Make a Difference

Akrutisinha04 May, 2026Health

Imagine living with a medical condition that no one can name. Imagine navigating a healthcare system where your symptoms don’t fit neatly into a diagnostic box. Imagine hearing, time and again, “We don’t know what this is.” For millions of people around the world, including those in India and the United States, this is not a figment of imagination. It’s a daily reality.

Gene Therapy for All: Jennifer Doudna’s $1 Billion Plan to Make Cures Affordable

Akrutisinha04 May, 2026Health

For millions of families affected by rare diseases, the promise of gene therapy represents something that has long been missing: real hope for treatment. But scientific breakthroughs alone are not enough. Ensuring that these therapies reach patients globally will require collaboration between scientists, policymakers, patient advocates, and healthcare systems.

UN General Assembly Adopts Resolution on Rare Disease at its 76th Session

Akrutisinha04 May, 2026Health

The UN’s resolution at its 76th session marked a turning point: recognition, commitment, and a roadmap for action. But resolutions are only as good as their implementation. At IndoUSrare, we believe that by working together—advocacy, research, policy partners, patients—these aren’t distant hopes, but achievable goals. The UN resolution gives us a compass; let us be the hands and the feet to turn it into change.

Breaking Barriers A Glimpse into IndoUSrare’s Collaborations Ahead of the Bridging RARE Summit

Akrutisinha05 Apr, 2026Health

Rare diseases affect millions, yet for many families, the journey from first symptoms to diagnosis, treatment, or even trial participation is painfully long. Fragmented systems, differences in regulations, ethics, access, language, trial infrastructure, and supply chains mean that being in the “wrong geography” can severely delay care.

Rare Disease Day 2026: Advancing Global Equity Through Innovation, Collaboration, and Commitment

Akrutisinha05 Apr, 2026Health

On February 28, 2026, IndoUSrare convened global leaders, innovators, clinicians, patient advocates, and entrepreneurs for its Rare Disease Day Celebration and Innovation Showcase. The event brought together diverse participants across disciplines to address one of the most pressing global health challenges of our time: closing the persistent gaps in rare disease diagnosis, treatment, access, and equity.