• About Us
  • Advertise
  • Contact Us
  • DMCA
  • Follow on Google News
Thursday, August 7, 2025
  • Login
Pioneer News
ADVERTISEMENT
  • Home
  • India
    • National
    • State News
  • Education
  • Business
  • World
  • Entertainment
  • Lifestyle
    • Health & Fitness
    • Travel
    • Fashion & Beauty
    • Food
  • Tech
    • App News
    • Gadgets
  • Auto
  • Others
    • Sports
    • Finance/Money
    • Agriculture
    • Science
    • Astrology
    • Social Work
    • Press Release
No Result
View All Result
  • Home
  • India
    • National
    • State News
  • Education
  • Business
  • World
  • Entertainment
  • Lifestyle
    • Health & Fitness
    • Travel
    • Fashion & Beauty
    • Food
  • Tech
    • App News
    • Gadgets
  • Auto
  • Others
    • Sports
    • Finance/Money
    • Agriculture
    • Science
    • Astrology
    • Social Work
    • Press Release
No Result
View All Result
Pioneer News
No Result
View All Result
Home Lifestyle Health & Fitness

Do rare Diseases account for the economic burden on India?

Pioneer News by Pioneer News
March 18, 2023
in Health & Fitness
0
Do rare Diseases account for the economic burden on India?

The meaning of the term “Rare” is “not occur very often”, but rare diseases are cumulatively not so rare anymore. WHO refers to the rare disease as an often debilitating life-long disease or disorder with a prevalence of 1 or less per 1000 population. Although, different countries have different definitions to suit their particular requirements and in the context of their people, the health care system and resources.

What are the Issues and Challenges in India?

RelatedPosts

Do Not Ignore Chest Discomfort: Know About the Early Signs of Heart Attack

Do Not Ignore Chest Discomfort: Know About the Early Signs of Heart Attack

August 1, 2025
Robotic-Assisted Breast Surgery: A New Era in Cancer Care- Dr. Sandeep Nayak

Robotic-Assisted Breast Surgery: A New Era in Cancer Care- Dr. Sandeep Nayak

July 31, 2025

The landscape of rare diseases is complicated and heterogeneous. The field of rare diseases is continuously changing as new rare diseases and conditions are being recognized and reported regularly in the medical sector. There are a few rare diseases where progress has been made, but the field is still at an initial stage. Doctors, researchers and policymakers did not know about rare diseases for many years. There has been no real research or public health policy concerning issues related to this field to date. This poses alarming obstacles in developing a comprehensive policy on rare diseases. Nevertheless, it is necessary to take steps, in the short as well as long term, to tackle rare diseases holistically and comprehensively.

ADVERTISEMENT

Rare disorders constitute a significant economic burden independent of a country in size and demography, arising from increased healthcare spending. As resources are limited, there is a macroeconomic allocation dilemma due to the opportunity cost of funding rare disease treatment: on the one hand, health problems of a much larger number of persons can be addressed by allocating a relatively smaller amount, on the other, much greater resources will be required for addressing health problems of a relatively smaller number of persons.

Rare disease landscape: India

In India, there is a lack of data on how many people suffer from rare diseases worldwide. The cases recognized so far have been diagnosed at tertiary-level hospitals. The lack of data on rare diseases hinders understanding the extent of the burden of rare diseases and the development of a definition. In such cases, the economic burden of most rare diseases is unknown and cannot be appropriately estimated from the existing data sets. 

Although extremely challenging, considering the complexity of several diseases and the difficulties in diagnosis, there is a clear requirement to undertake systematic epidemiological studies to ensure the number of people suffering from rare diseases in India. So far, only a limited number of diseases have been recorded in India that are globally considered rare diseases through ambit may comprise 7000 to 8000 disorders. 

Common reported rare diseases consist of:

  • Primary immunodeficiency disorders, 
  • Lysosomal storage disorders (such as Gaucher’s disease, Mucopolysaccharidoses, Pompe disease, Fabry disease etc.) 
  • Small molecule inborn errors of metabolism (Maple Syrup urine disease, organic acidemias etc.), 
  • Osteogenesis imperfecta, 
  • Cystic Fibrosis, 
  • Duchenne muscular dystrophy, spinal muscular atrophy, etc.  

Initiatives by the Government of India for Rare Diseases

Initiatives by the Government of India for rare disease patients:

  • The Policy offers financial support of up to Rs. 50 lakhs to patients suffering from any category of rare disease for treatment at any of the CoEs mentioned in NPRD-2021, outside the Umbrella Scheme of Rashtriya Arogaya Nidhi.
  • State Governments can consider supporting patients with rare disorders that can be managed with special diets or hormonal supplements, or other relatively inexpensive cost interventions.

Ikris Pharma Network: Helping in access to Rare disease medicine

Ikris Pharma Network CEO Praveen Sikri believes “every life matters,” and he led the foundation of Ikris Pharma Network (IPN) with the idea of helping people to access the World’s most advanced treatment option to date, irrespective of geographical boundaries. Under the Named Patient Import Programme, IPN is helping patients with Rare and other chronic diseases to access hard-to-access medicines unregistered in India and other parts of the World. So far, Ikris Pharma Network has served 1000+ patients with rare diseases globally. Over the years, Ikris Pharma has successfully built an efficient network and is the only company with a pan-India presence certified by GDP and ISO under WHO Guidelines. 

The named Patient Programme has been designed by the Government to make sure that medicines if required in exceptional medical circumstances, can be supplied to a patient even when it is at investigational and clinical development stages or is unregistered and unlicensed for marketing, distribution, and sale in a particular country. The aim is to provide access to such medicines outside the scope of the regular legal and operational framework. As long as a doctor/ healthcare professional certifies that all existing therapy options within the country have been exhausted for a given patient condition, and the only recourse to save the patient’s life could be in the form of that investigational or unregistered medicine, patients and families can access facilities under Named Patient Import Programme.

Apart from facilitating services such as the Named Patient Import Program, Ikris Pharma has expertise in Reference Listed Drugs sourcing, export of generic medicines, contract manufacturing and validated cold chain supplies, serving worldwide.  

For more information visit: https://www.ikrispharmanetwork.com/ 

Tags: Ikris Pharmarare diseases
ShareTweetSharePinSendShareShareSend
ADVERTISEMENT
Pioneer News

Pioneer News

Related Posts

Do Not Ignore Chest Discomfort: Know About the Early Signs of Heart Attack
Health & Fitness

Do Not Ignore Chest Discomfort: Know About the Early Signs of Heart Attack

by Pioneer News
August 1, 2025
Robotic-Assisted Breast Surgery: A New Era in Cancer Care- Dr. Sandeep Nayak
Health & Fitness

Robotic-Assisted Breast Surgery: A New Era in Cancer Care- Dr. Sandeep Nayak

by Pioneer News
July 31, 2025
Why Is Today’s Generation More Affected by Heartbreaks? Teens Experiencing Depression & PTSD After Breakups: Dr. Prakhar Jain
Health & Fitness

Why Is Today’s Generation More Affected by Heartbreaks? Teens Experiencing Depression & PTSD After Breakups: Dr. Prakhar Jain

by Pioneer News
July 24, 2025
The Science of Thicker Hair: Why Combining Bio-FUE with GFC Is Redefining Hair Restoration
Health & Fitness

The Science of Thicker Hair: Why Combining Bio-FUE with GFC Is Redefining Hair Restoration

by Pioneer News
July 24, 2025
STERIS, Safety in Healthcare, infection prevention and procedural solutions,
Health & Fitness

How STERIS Is Redefining Safety in Healthcare Through Innovation and Intelligence

by Pioneer News
July 24, 2025
Next Post
Japan-based Toyota Tsusho Corporation and Tokai Corp Partner to Launch Valabhi Hospital Services

Japan-based Toyota Tsusho Corporation and Tokai Corp Partner to Launch Valabhi Hospital Services

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

  • Trending
  • Comments
  • Latest
Things to Learn from The Weekly with ChoubeyJi

Things to Learn from The Weekly with ChoubeyJi

February 25, 2022
Oral Asformas – The Digital Marketing Entrepreneur who lit up his life through his Never-Back-Down attitude

Oral Asformas – The Digital Marketing Entrepreneur who lit up his life through his Never-Back-Down attitude

April 21, 2022
KGF Star Yash in Conversation with Anchor Anupam Anand

KGF Star Yash in Conversation with Anchor Anupam Anand

March 1, 2022
Choubey Ji is back with Season 2

Choubey Ji is back with Season 2

December 30, 2022

Changa Video sharing app crosses 2 million on play store

0

World’s first DeepUV Air Sanitizer, launched by Indian startup Dokat Inc.

0

Japan’s tech start-ups bitgrit and Atrae rolls out professional ‘matching’ app in India offering jobs in India

0

Surat’s company invents – low-cost,high-end ventilator in support of the Aatmanirbhar Bharat Abhiyan

0
Shine a Little Brighter This Rakhi – Gifting Made Elegant by DRK Jewels

Shine a Little Brighter This Rakhi – Gifting Made Elegant by DRK Jewels

August 6, 2025
VTDS, Vijayan Trishul Defence Solutions, Sahil Luthra,

Forged with Purpose: How VTDS is Powering India’s Defence Future with Indigenous Innovation and Integrity

August 5, 2025
Shingar Cosmetics Brings a Legacy of Indian Beauty into the Present with their New Line of ‘Shingar Silky’

Shingar Cosmetics Brings a Legacy of Indian Beauty into the Present with their New Line of ‘Shingar Silky’

August 4, 2025
From Stagnation to 10X Success: How Sarika Rangani’s 23-Day Productivity Challenge Is Re-Engineering Corporate Careers

From Stagnation to 10X Success: How Sarika Rangani’s 23-Day Productivity Challenge Is Re-Engineering Corporate Careers

August 4, 2025

Categories

  • Agriculture
  • App News
  • Astrology
  • Auto
  • Business
  • Education
  • Entertainment
  • Fashion & Beauty
  • Finance/Money
  • Food
  • Gadgets
  • Health & Fitness
  • Lifestyle
  • National
  • Photography
  • Politics
  • Press Release
  • Religion
  • Science
  • Social Work
  • Sports
  • State News
  • Tech
  • Travel
  • Uncategorized
  • World
ADVERTISEMENT

Pioneer News, digital news and story platform bring you the news, articles, stories, and opinions on the latest happenings worldwide covering various sectors like nation, politics, and governance, social sector, review, foreign affairs, defence and security, latest review, lifestyle, entertainment, sports, technology, auto sectors, education, business and start-ups updates, Agriculture, Science, finance, money, food, and culture, etc.

Categories

  • Agriculture
  • App News
  • Astrology
  • Auto
  • Business
  • Education
  • Entertainment
  • Fashion & Beauty
  • Finance/Money
  • Food
  • Gadgets
  • Health & Fitness
  • Lifestyle
  • National
  • Photography
  • Politics
  • Press Release
  • Religion
  • Science
  • Social Work
  • Sports
  • State News
  • Tech
  • Travel
  • Uncategorized
  • World
August 2025
M T W T F S S
 123
45678910
11121314151617
18192021222324
25262728293031
« Jul    

Recent News

  • Shine a Little Brighter This Rakhi – Gifting Made Elegant by DRK Jewels
  • Forged with Purpose: How VTDS is Powering India’s Defence Future with Indigenous Innovation and Integrity
  • Shingar Cosmetics Brings a Legacy of Indian Beauty into the Present with their New Line of ‘Shingar Silky’
  • From Stagnation to 10X Success: How Sarika Rangani’s 23-Day Productivity Challenge Is Re-Engineering Corporate Careers
  • Rest The Case Hosted Vital Discussion on Admissibility of Secret Recordings
  • About Us
  • Advertise
  • Contact Us
  • DMCA
  • Follow on Google News

© 2021 Pioneer News.

No Result
View All Result
  • Home
  • India
    • National
    • State News
  • Education
  • Business
  • World
  • Entertainment
  • Lifestyle
    • Health & Fitness
    • Travel
    • Fashion & Beauty
    • Food
  • Tech
    • App News
    • Gadgets
  • Auto
  • Others
    • Sports
    • Finance/Money
    • Agriculture
    • Science
    • Astrology
    • Social Work
    • Press Release

© 2021 Pioneer News.

Welcome Back!

Login to your account below

Forgotten Password?

Retrieve your password

Please enter your username or email address to reset your password.

Log In