National Conference on Rare Diseases

Why in News

The Union Ministry of Health and Family Welfare organised a 2-day National Conference on Rare Diseases in New Delhi on 5–6 May 2026, highlighting India’s strengthened approach to tackling rare diseases. 

Key Highlights of the Conference

• Focus on improving diagnosis, treatment, and awareness of rare diseases
• Reinforced need for coordinated healthcare systems and policy support
• Emphasised strengthening research, infrastructure, and patient care networks

Policy Framework in India

• Rare diseases first highlighted in National Health Policy 2017.
• Institutionalised through the National Policy for Rare Diseases 2021.

Key Features:

• Implementation through Centres of Excellence (CoEs):
  • Expanded from 8 to 15 centres
  • Includes 2 CoEs in North-East India
• Financial assistance: Up to ₹50 lakh per patient for treatment
• Support measures:
  • Exemption of life-saving drugs from basic customs duty
  • Budgetary support for expanding access to therapies

What are Rare Diseases?

• Defined by World Health Organization as:
  • Diseases affecting fewer than 65 per 100,000 people (≈1 in 2,000)
• Characteristics:
  • Often genetic in origin
  • Chronic, serious, and sometimes life-threatening
  • Require long-term, specialised care

Key Concerns

• Difficult diagnosis due to low prevalence and limited expertise
• High treatment cost and limited availability of drugs
• Lack of widespread awareness and screening systems
• Nearly 50% of cases occur in children, contributing to early mortality.

Significance

• Strengthens India’s healthcare preparedness for rare diseases
• Moves towards equitable access to advanced treatments
• Aligns with global efforts in rare disease research and care.