Amyloidosis is one of India’s most misunderstood and underdiagnosed rare diseases—yet for thousands of families, it is an everyday reality. The recent Amyloidosis Support Group of India (ASGI) Bihar Chapter Webinar on 26 November 2025 brought forward critical insights, painful truths, and an urgent reminder: awareness saves lives, and silence costs them.
At Rasri Enterprise, we believe that awareness is not just a medical responsibility—it is a constitutional right. Every citizen deserves the Right to Health, the Right to Information, and equal access to early diagnosis and treatment. When rare diseases are ignored, these rights stand violated.
Understanding Amyloidosis: Why It Matters Now
During the webinar, experts from hematology, cardiology, nephrology, neurology, and pathology highlighted a unified truth:
Most cases of amyloidosis remain undiagnosed until it is too late.
As Dr. Avinash Singh noted, identified cases today represent only the “tip of the iceberg”—just 15–20% of actual cases in India.
Key early symptoms—fatigue, swelling, neuropathy, unexplained protein in urine—often go unnoticed until major organs such as the heart, kidneys, and nerves are already damaged.
This isn’t just a health issue; it is a systemic governance gap.
The Government’s Limited Support: A Reality We Must Address
India has made progress on several public health fronts—but when it comes to rare diseases, the country still has a long road ahead.
From the insights shared in the webinar:
- Many patients, especially in states like Bihar, die without even receiving a diagnosis. Minutes of Meeting.NOVEMBER.pdf
- There is no robust national program for rare disease screening in public hospitals.
- Access to advanced diagnostics like Mass Spectrometry, although available in government-linked institutes, is not widespread. Minutes of Meeting.NOVEMBER.pdf
- Financial support for rare diseases remains inconsistent and difficult to access.
- Physicians struggle due to limited awareness and absence of mandated training modules.
For a country that prides itself on constitutional equality, this gap is not just medical—it is a policy failure.
Patients with rare diseases deserve:
✔ Early detection programs
✔ Subsidised diagnostic support
✔ National patient registry
✔ Regional treatment hubs
✔ Integration of telehealth and AI support systems
Without these, the constitutional promise of justice—social and economic—remains incomplete.
Digital Health & AI: A Ray of Hope
The webinar showcased promising digital efforts by ASGI and its partners:
- Launch of the National Patient Registry
- WhatsApp-based Maya AI engine for prescription reminders and unified medical record storage
- Focus on mental health, nutrition, and remote patient monitoring
As shared during the session, chronic disease management isn’t only medical—50% of the battle is psychological, and technological support can radically improve patient lives.
These innovations show what is possible when private, civil, and medical sectors collaborate. Now, the government must step in and build on these foundations.
What Rasri Enterprise Advocates For
As a socially responsible organisation, Rasri Enterprise believes that rare disease care must be treated as a constitutional responsibility, not a charitable afterthought.
We advocate for:
1. Mandatory Rare Disease Training for Doctors
Early signs of amyloidosis must be part of every medical curriculum.
2. Government-Funded Diagnostic Support
Simple tests like proteinuria check and fat pad biopsy should be accessible to all.
3. National Registry & Real-time Reporting
Echoing ASGI’s initiative, a central registry is essential to track and treat cases. Minutes of Meeting.NOVEMBER.pdf
4. State-Level Centers of Excellence
AIIMS Patna’s initiative to create a Center for Rare and Neglected Diseases should be a model for all states. Minutes of Meeting.NOVEMBER.pdf
5. Inclusion of Rare Diseases in Public Health Schemes
PMJAY and state health missions must formally integrate rare disease care.
The Way Forward: Awareness & Accountability
Amyloidosis awareness is not just a campaign—it is a constitutional movement. The right to health is not optional; it is the moral and legal duty of the state.
Rasri Enterprise stands committed to amplifying awareness, supporting initiatives like ASGI, and holding institutions accountable so that no patient in India suffers due to ignorance, delay, or lack of support.
In a nation where every life holds equal constitutional value, no disease—rare or common—should be left in the shadows.