National Policy for Rare Diseases (NPRD) 2021

  • 07 Feb 2025

In News:

Patient advocacy groups across India have raised serious concerns over delays in implementing the National Policy for Rare Diseases (NPRD) 2021, which has left many rare disease patients — especially children — in life-threatening situations. They have urged the government for immediate intervention to resume life-saving treatments and release stalled funds under the policy.

Rare Diseases:

  • Rare diseases are severe, often genetic, life-threatening disorders that impact a small percentage of the population.
  • They disproportionately affect children, with 30% of diagnosed patients not surviving beyond age five without timely treatment.
  • Examples include Lysosomal Storage Disorders (LSDs) such as Gaucher, Pompe, Fabry, and MPS I & II.

About NPRD 2021

The Ministry of Health & Family Welfare launched the National Policy for Rare Diseases in March 2021 to streamline the diagnosis, research, and treatment of rare diseases in India.

Key Features of NPRD 2021:

  • 63 rare diseases currently included under the policy (as recommended by the Central Technical Committee for Rare Diseases (CTCRD)).
  • Categorization of diseases into three groups:
    • Group 1: Diseases amenable to one-time curative treatment.
    • Group 2: Diseases requiring long-term/lifelong treatment with relatively lower cost.
    • Group 3: Diseases requiring very high-cost lifelong therapy where patient selection is critical.

Institutional Support:

  • 12 Centres of Excellence (CoEs) identified at premier government hospitals to provide diagnosis and treatment.
  • Nidan Kendras established to provide genetic testing and counselling services.
  • National Consortium for Research and Development on Therapeutics for Rare Diseases (NCRDTRD) set up to coordinate R&D and promote indigenous drug manufacturing.
  • Tax exemptions (on GST and Customs Duty) granted for imported drugs for individual and institutional use.

Financial Provisions:

  • Financial assistance of up to ?50 lakh per patient for treatment at CoEs.
  • Patients must register at CoEs to receive diagnosis and initiate treatment.

Challenges and Crisis

Despite policy provisions, implementation has been stalled, leading to a healthcare emergency for rare disease patients.

Key Issues Raised:      

  • Insufficient funding: The ?50 lakh cap is inadequate for chronic and ultra-rare diseases that need lifelong therapy.
  • Administrative delays: Fund disbursement to CoEs has been slow, disrupting continuity of treatment.
  • Impact on Patients:
    • Patients like Alishba Khan, Ashok Kumar, Imran Ghoshi, and Adrija Mudy with Gaucher or MPS I have exhausted their funding.
    • Patients who had previously stabilized are now regressing due to interrupted therapy at leading hospitals like AIIMS Delhi, IGICH Bangalore, and IPGMER Kolkata.

Legal Developments:

  • On October 4, 2024, the Delhi High Court directed the Ministry of Health and Family Welfare to:
    • Release additional funds beyond the ?50 lakh limit.
    • Create a ?974 crore National Fund for FY 2024–25 and 2025–26.
  • Months later, no concrete action has been taken, further eroding trust in the policy's effectiveness.

Demands by Advocacy Groups

  • Sustainable, long-term funding model for lifelong treatment of rare and ultra-rare diseases.
  • Immediate fund release to CoEs and simplification of administrative processes.
  • Ensure uninterrupted access to essential therapies and expand the scope of financial support.

National Geospatial Mission

  • 03 Feb 2025

In News:

Finance Minister Nirmala Sitharaman announced the launch of a National Geospatial Mission in the Budget 2025-26.

Key Highlights:

Objective: To modernize land records, enhance urban planning, and create a robust geospatial infrastructure to support India’s broader development goals, including sustainable growth, efficient governance, and improved public service delivery.

Key Features of the Mission:

  • Modernization of Land Records:
    • Digitization and updation of land records using geospatial technology.
    • Aim to reduce land disputes and promote efficient and transparent land use.
  • Urban and Infrastructure Planning:
    • Provides high-resolution geospatial data for informed urban planning.
    • Supports better design and execution of infrastructure through integration with the PM Gati Shakti framework.
  • Development of National Geospatial Data Infrastructure (NGDI):
    • Integrates geospatial data from multiple departments and ministries.
    • Enables seamless access and interoperability for users across sectors.
  • Open Geospatial Data Policy:
    • Encourages private sector participation by allowing access to non-sensitive, high-resolution data.
    • Reduces reliance on foreign geospatial data providers.
  • Sectoral Impact:
    • Agriculture: Precision farming, resource mapping, and yield optimization.
    • Disaster Management: Enhances early warning systems and response planning.
    • Environmental Monitoring: Facilitates conservation, deforestation tracking, and ecosystem health analysis.
    • Transportation: Improves logistics, routing, and infrastructure placement.
    • Climate Monitoring: Aids in data-driven climate action and adaptation planning.
  • Technological Integration:
    • Utilizes emerging technologies such as AI, drones, and quantum computing for spatial data collection and analysis.
    • Promotes research and development in geospatial science to drive innovation.
  • Support to Private Sector:
    • Anticipated growth in demand for services from geospatial startups, drone companies, and mapping enterprises.
    • Strengthens India’s indigenous geospatial capability aligned with the booming global geospatial market (projected to reach $1,064 million by 2030).

Significance and Alignment with National Goals:

  • Enhances transparency and efficiency in land governance.
  • Contributes to sustainable urban development.
  • Aligns with Digital India and Atmanirbhar Bharat by reducing data dependency on foreign sources.
  • Acts as a foundational enabler for India’s development agenda, particularly in areas of resource management, climate resilience, and national security.

Hyperloop Technology

  • 12 Dec 2024

In News:

India’s first hyperloop test track (410 meters) completed by Indian Railways, IIT-Madras’Avishkar Hyperloop team and TuTr (incubated startup) at IIT-M discovery campus, Thaiyur in Chennai, Tamil Nadu.

India’s First Hyperloop Test Track:

  • Location: IIT Madras’ Discovery Campus, Chennai.
  • Collaboration: Indian Railways, IIT-Madras' Avishkar Hyperloop team, and TuTr Hyperloop (startup).
  • Track Length: 410 meters.
  • Test Speed: Initial successful test at 100 km/h; plans for 600 km/h in the next phase.
  • Passenger Capacity: 40–100 passengers per pod, depending on design.

What is Hyperloop Technology?

  • Concept: A high-speed transport system using pods in low-pressure vacuum tubes, designed to achieve speeds similar to aircraft (up to 1,100 km/h).
  • Working:
    • Magnetic Levitation (Maglev): Pods float on magnets, eliminating friction.
    • Vacuum Tubes: Reduces air resistance for high-speed travel.
    • Propulsion: Linear induction motors propel pods.
  • Energy: Solar-powered, designed for zero emissions.

India’s Hyperloop Projects:

  • Current Status:
    • Successful testing of a 410-meter test track at IIT Madras.
    • Ongoing feasibility studies for routes like Chennai Airport–Parandur, Mumbai–Pune, and Amritsar–Chandigarh.
  • Phase 1 & 2: First phase involves a 11.5-kilometer track; future expansion to 100 km.
  • Mumbai–Pune Corridor: Planned as India’s first full-scale Hyperloop system, aiming to reduce travel time from 3–4 hours to 25 minutes.

Benefits of Hyperloop:

  • Speed: Capable of reaching speeds up to 1,100 km/h (operational speed around 360 km/h).
  • Efficiency: Reduces travel time, energy-efficient with reduced air resistance and friction.
  • Sustainability: Powered by renewable energy (e.g., solar power), offering zero emissions.
  • Point-to-Point Travel: No intermediate stops, making it more time-efficient.

Challenges:

  • Infrastructure Costs: Expensive to build the vacuum tubes, stations, and supporting systems.
  • Land Acquisition: Difficulty in acquiring land, especially in densely populated areas.
  • Regulatory Issues: Lack of a specific regulatory framework for such advanced transport systems.
  • Technological Barriers: Complex engineering challenges, including development of maglev systems and vacuum seals.

Global Context:

  • Origin: Concept proposed by Elon Musk in 2013.
  • Worldwide Adoption: Hyperloop is being explored globally, with projects in the U.S., UAE, and Europe.

GG Tau A System

  • 11 Dec 2024

In News:

GG Tau A System: Located about 489 light-years from Earth, this system is a triple-star setup that is between 1 to 5 million years old. This makes it an ideal system for studying the early stages of planetary formation.

Findings from the Discovery:

  • Protoplanetary Disk: The system features a protoplanetary disk made of gas and dust, where new planets are forming. Researchers from NISER (National Institute of Science Education and Research), Odisha detected emissions from key molecules in the disk.
  • Chemical Molecules: The molecules are frozen on tiny dust particles in the coldest regions of the disk (temperatures between 12 K and 16 K). These frozen molecules could serve as the building blocks for new planets.

Significance of the Discovery:

  • Triple-Star Configuration: GG Tau A’s triple-star system is rare, and it has complex gravitational interactions among the three stars. This complicates how the gas and dust disk behaves and provides unique insights into planetary formation in multi-star systems.
  • Study of Planet Formation: Traditionally, planets form around single stars or in binary systems. However, multi-star systems like GG Tau A present challenges for planet formation. Studying this system helps scientists understand how planets can form in more complex environments.
  • Cold Conditions for Planet Formation: The study found that icy conditions in the disk are essential for the accumulation of materials that form planets. These low temperatures (below the freezing point of carbon monoxide) allow dust and gas particles to clump together, creating the foundation for exoplanets.

Broader Implications:

  • Exoplanet Diversity: This research enhances our understanding of how planets form in different types of star systems, contributing to the study of exoplanets and their potential diversity across the universe.
  • Astrophysics and Planetary Science: This discovery plays a crucial role in improving our knowledge of the early stages of planet formation, especially in complicated star systems like triple-star setups, which are rare but can provide valuable insights into how planetary systems evolve under unique conditions.

Research Tools:

  • The team used advanced radio telescopes located in the Atacama Desert (Chile) to observe the emissions from the disk, highlighting the role of cutting-edge technology in space exploration and astronomical research.

Army Tactical Missile System (ATACMS)

  • 20 Nov 2024

In News:

  • Russia reported that Ukraine fired six US-made Army Tactical Missile System (ATACMS) missiles at Bryansk, Russia, marking a significant escalation in the ongoing conflict.
  • This came after US President Joe Biden authorized Ukraine to use long-range missiles to strike deeper inside Russian territory, easing previous restrictions on such weapons

About the Army Tactical Missile System (ATACMS)

  • Overview:
    • ATACMS is a surface-to-surface artillery weapon system designed to strike targets at much greater ranges than conventional artillery, rockets, or missiles.
    • Manufacturer: Produced by Lockheed Martin, a leading US defense contractor.
    • First Use: It was first used during the 1991 Persian Gulf War.
  • Key Features:
    • Guidance: ATACMS missiles are inertially guided ballistic missiles, capable of operating in all weather conditions.
    • Range: Approximately 190 miles (305 km).
    • Propulsion: It uses a single-stage, solid propellant for propulsion.
    • Launch Platforms: Fired from platforms like the High Mobility Artillery Rocket System (HIMARS) and the M270 Multiple Launch Rocket System (MLRS).
    • Payload: ATACMS missiles can carry cluster munitions, releasing hundreds of smaller bomblets over a targeted area, increasing their destructive power.
  • Global Operators:Besides the US, ATACMS is also operated by countries such as Bahrain, Greece, South Korea, Taiwan, and the United Arab Emirates.

Proba-3 Mission

  • 06 Nov 2024

In News:

Europe's Proba-3 mission to arrive in India for launch aboard PSLV-XL by ISRO

Key Highlights:

  • Objective: The Proba-3 mission, led by the European Space Agency (ESA), aims to observe the Sun’s corona by creating an artificial solar eclipse. This will allow continuous observation of the Sun’s faint outer atmosphere, which is typically only visible during a natural solar eclipse.
  • Key Features:
    • Artificial Solar Eclipse: The two spacecraft will fly in formation to maintain a shadow between them, enabling the uninterrupted observation of the solar corona.
    • Formation Flying: The satellites must maintain a precise formation with an accuracy of one millimetre, equivalent to the thickness of a fingernail.

Mission Details

  • Launch Date: Scheduled for December 4, 2024.
  • Launch Location: Satish Dhawan Space Centre near Chennai, India.
  • Launch Vehicle: The PSLV-XL rocket developed by ISRO will be used for the launch.
  • Spacecraft Mass: The combined mass of the two spacecraft is 550 kg.
  • Orbit: The spacecraft will be placed in a highly elliptical orbit with a maximum altitude of 60,000 km to facilitate the precise formation flying.
    • This high altitude minimizes Earth’s gravitational pull and reduces the amount of propellant required to maintain their positions during the mission.

Mission Significance

  • Solar Observation: The primary objective is to observe the Sun’s corona, which has been challenging to study due to its faintness. The artificial eclipse will allow continuous data collection on solar activity.
  • Formation Flying: This technology will allow the two satellites to maintain autonomous flight with millimetre-level precision, which is a significant advancement in satellite formation control.
  • Six-Hour Observation Windows: Each formation flying session will last for up to six hours, during which the satellites will observe the Sun's corona.

Technological and Scientific Contributions

  • ASPIICS Instrument: The ASPIICS (AStronomical PIcture Camera for the Intense Corona of the Sun) will be the mission's primary instrument, developed by the Royal Observatory of Belgium. It will provide crucial data on solar activity and space weather.
  • International Collaboration: The mission is a collaborative effort involving 14 ESA member states and various organizations across Europe.
  • Mission Control: The mission will be managed from the ESA’s European Space Operations Centre (ESOC) in Belgium, with significant pre-launch training and preparations already underway.

ISRO's Role and Historical Context

  • Launch by ISRO: The Proba-3 mission will be ISRO’s first launch for ESA since 2001, marking an important milestone in India-Europe space cooperation.
  • PSLV-XL Rocket: ISRO’s PSLV-XL rocket is known for its reliability and capability in deploying satellites into precise orbits. It is well-suited to carry the 550 kg Proba-3 duo into a highly elliptical orbit for the mission.