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 Why in news?

The Union Health and Family Welfare ministry recently approved the National Policy for Rare Diseases 2021.

What are rare diseases?

• Rare diseases are broadly defined as diseases that infrequently occur in a population; three markers are used:
  1. the total number of people with the disease
  2. its prevalence
  3. the availability/non-availability of treatment options
• WHO defines rare disease as often debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population.
• However, different countries have their own definitions.
• It is defined in a way to suit their specific requirements and in context of their own population, health care system and resources.
• As per an estimate, there are 7,000 known rare diseases with an estimated 300 million patients in the world.
  • Of this, 70 million are in India.
• They include inherited cancers, autoimmune disorders, congenital malformations, Hirschsprung’s disease, Gaucher disease, cystic fibrosis, muscular dystrophies and Lysosomal Storage Disorders (LSDs).

What are the key provisions in the policy?

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2)  International Day of Sport for Development and Peace: 6 April

•The World Bank Board of Executive Directors has approved a USD 32 million projects to improve management capacity and quality of health services in Mizoram. The project titled “Mizoram Health Systems Strengthening Project” will strengthen the governance and the management structure of the Mizoram Health department and its subsidiaries. This project will support the state government’s efforts to deliver quality healthcare for the poor and vulnerable and those located in remote areas.

4)  World Bank, AIIB approve loan for USD 300 million projects to Punjab

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5)  Alfred Aho Wins the 2020 ACM Turing Award

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•Aho and Ullman began working together at Bell Labs in 1967 and their early efforts included developing efficient algorithms for analyzing and translating programming languages. Even when Ullman began a career in academia in 1969 while Aho remained at Bell Labs, they continued their collaboration for several decades and shaped the foundations of programming language theory and implementation, as well as algorithm design and analysis.

6)  Suman Chakraborty to get 30th GD Birla Award for Scientific Research

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•He is credited with establishing the first microfluidics laboratory in the framework of an academic institution in India to facilitate the study of how tiny volumes of fluids flow through small channels. Apart from being a reputable academic, Chakraborty has invented technologies that have not only been patented but also licensed to industrial houses for commercialisation.

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8)  Shabir Khandwawala appointed new BCCI ACU chief

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1)  International Mine Awareness Day: 4 April

•The United Nations’ International Day for Mine Awareness and Assistance in Mine Action is celebrated on April 4 each year. On 8 December 2005, the General Assembly declared that 4 April of each year shall be observed as the International Day for Mine Awareness and Assistance in Mine Action. It was first observed on 4 April 2006.

•This year, the United Nations will promote mine action by highlighting how “Perseverance, Partnership, and Progress” have carried the sector through this challenging year.

•The day aims to raise awareness about landmines and progress toward their eradication. “Mine action” refers to a range of efforts to clear landmines and explosive remnants of war and to mark and fence off dangerous areas. It also includes assisting victims, teaching people how to remain safe in a mine-affected environment, advocating for universal participation in international treaties related to landmines, explosive remnants of war and their victims, and destroying landmines stockpiled by governments and non-state armed groups.

2)  International Day of Conscience: 5 April

•The United Nations declares April 5 as International Day of Conscience. This day serves to remind people to self-reflect, follow their conscience, and do the right things. This Day is observed every year on 5th April and the first International Conscience Day was observed in 2020. So in the current year 2021, the second United Nations (UN) International Day of Conscience celebrations are being held across the world.

•This day is celebrated to highlight the importance of conscience and the role of conscience in stopping people from harming others orally, physically, sexually, or mentally. International Conscience Day is celebrated to highlight that everyone has self-respect and the right to live with peace and security. Anti-humanity acts are defined by scholars on this day and they are condemned so the general public would hate and avoid such acts.

3)  Dr. Harsh Vardhan approves National Policy for Rare Diseases, 2021

•Union Health Minister Dr. Harsh Vardhan has approved National Policy for Rare Diseases, 2021. The policy aims to lower the high cost of treatment for rare diseases, with an increased focus on indigenous research & local production of medicines. The Policy also focuses on early screening and prevention through primary and secondary health care infrastructure such as Health and Wellness Centres and District Early Intervention Centres.

•A provision for financial support up to Rs.20 lakh under the Umbrella Scheme of Rashtriya Arogya Nidhi is proposed for treatment of those rare diseases that require a one-time treatment (diseases listed under Group 1 in the policy). Benefits to be extended to about 40% of the population eligible under PM Jan Arogya Yojana. 

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•Odisha-born Andhra Pradesh Governor Biswabhusan Harichandan received the Kalinga Ratna Samman for 2021. Vice-President M Venkaiah Naidu conferred Biswabhusan with the prestigious award in Cuttack on the occasion of the 40th annual day of the Sarala Sahitya Sansad at the Sarala Bhawan. The Kalinga Ratna Samman carries a silver idol of Goddess Saraswati, a copper plaque and a shawl.

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8)  Russia registers world’s 1st Covid vaccine Carnivac-Cov for animals

•The world’s first animal vaccine against the novel coronavirus has been registered in Russia, the country’s agriculture safety watchdog Rosselkhoznadzor. The vaccine for animals, developed by a unit of Rosselkhoznadzor (Federal Service for Veterinary and Phytosanitary Surveillance), was named Carnivac-Cov. 

•The immunity lasts for six months after the vaccination, but the dose’s developers are continuing to analyse this. The use of this vaccine, as per Russian scientists, can prevent the development of virus mutations. The use of this vaccine, as per Russian scientists, can prevent the development of virus mutations. It is the world’s first and only product for preventing Covid-19 in animals.

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•PhonePe, which first achieved market leadership on UPI in December, last year, has seen its transaction count grow steadily, on the back of rising merchant payments. Overall UPI transactions processed by PhonePe grew from 902.03 million in December 2020 to 975.53 million in February 2021.

10)  A book titled ‘Manohar Parrikar: Brilliant Mind, Simple Life’ by Nitin Gokhale

•A new book titled ‘Manohar Parrikar: Brilliant Mind, Simple Life’ authored by Nitin Gokhale was released. The book is published by Bloomsbury. It is an attempt to capture Parrikar’s persona — the man, the politician and the patriot. Gokhale is a renowned author, media trainer and founder of a specialised defence related website BharatShakti.in. and StratNewsGlobal.com.

•Through this book, the author presents the journey of the contribution of Parrikar to nation-building and his service to the Goan society, from being an IIT student to a social worker and to India’s defence minister. The book is a tribute to Parrikar, India’s former defence minister and four-time chief minister of Goa, the first IIT-ian to become a chief minister.

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