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Rare Disease Day

  • By shashank
  • •  Feb 28, 2022

The Rare Disease Day is observed to spread awareness about rare disease and improve treatment and medical representation for individuals with rare diseases. The European Organization for Rare Diseases established the day in the year 2008 to raise awareness for unknown and overlooked illnesses. As the day is dedicated to rare diseases, it was first observed on 29 February, a rare date that comes once in four years and ever since it is observed on the last day of February. 

The European Organization for Rare Diseases believed that the treatment for many rare diseases and the social networks to support people suffering from those diseases is inadequate. Also, previously there had not been any day representing the sufferers of rare diseases while there are days dedicated to sufferers of individual diseases like AIDS, cancer, etc. In the year 2009, Rare Disease Day was observed globally. The National Organization for Rare Disorders mobilized 200 rare disease patient advocacy organizations in the US while organizations in other countries placed efforts to coordinate activities and promote the day. 

Motive

The primary motive of this day is to spread awareness among the general public, decision makers, researchers, health professionals, industry representatives and public authorities about rare diseases and their impact on the lives of sufferers. There is great need to build awareness as there is no cure for the majority of rare diseases and many are even left undiagnosed.

What is Rare Disease? 

The World Health Organization defines rare disease as a lifelong disease with a prevalence of one or less per thousand. In the USA, rare disease is defined as per its prevalence. “Any disease or condition that affects less than 200,000 people in the country” or 1 or so in every 1,500 people is considered a rare disease. In Japan, rare disease is defined as affecting not more than 1 person in every 2,500. While in India, the disease is categorized rare when affecting 1 or so in 10,000 people.

There are around 6,000 to 8,000 existing rare diseases identified globally and new ones are being reported regularly. Around 75% of these affect children while remaining develop in adulthood. This makes this disease category one of the deadliest for the youth of the country. About 80% of rare disease patients are affected by around 350 rare diseases. These include rare cancers, autoimmune diseases, congenital malformations and some infectious diseases. Some examples of rare diseases are Acidemia, Cystic Fibrosis, muscular dystrophies, Hemangiomas, Hirschsprung disease, Pompe disease, etc. 

Rare diseases pose different challenges from those of more common diseases, particularly for diagnosis. There are scarce resources and less medical expertise for these types of diseases. WHO prioritizes supporting countries working towards universal health coverage and ensures that all people have access to health services as and when they need without facing any financial hardship. This involves access to diagnosis and treatment for people who suffer from rare diseases. It is seeking to foster conversation between regulators, insurers, pharmaceutical companies and patient groups to ensure sustainable access to medicines, including orphan drugs. 

Jolly RX.com is dedicated to the cause and ensures that people are able to find the rare medicines. It provides a convenient platform where users can easily find rare drugs.

About Jolly RX

Jolly RX.com is an online medical store started by Jolly technology portal. The aim of the portal is to improve Indian healthcare by offering hard to find drugs and diagnostics at convenient prices. It provides medical establishments a wide range of medicines along with value-added services. It grants a reliable platform through which medical establishments can search for their required supplies, order them at competitive prices and get them delivered at their door-step. The company has a wide network connecting around more than 500 medical establishments across the nation including Tier 2, Tier 3 and remote locations. The venture is driven by the purpose of providing optimum healthcare facilities and making all ends meet to achieve its motive.


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