World Rare Disease Day observed

Mar 1, 2018 09:59 IST

The World Rare Disease Day was observed across the globe on February 28, 2018 with the aim to raise awareness about rare diseases and their impacts.

The day was commemorated with events in over 80 countries and regions across the world. The day was coordinated by the European Organisation for Rare Diseases (EURORDIS), which promotes research on rare diseases and commercial development of orphan drugs.

It is observed on the last day of February each year.

Objective of the Day

The main objective of the day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives.

It also seeks to encourage researchers and decision makers to address the needs of those living with rare diseases.

Theme

The theme for Rare Disease Day 2018 is research, continuing on from Rare Disease Day 2017.

Rare disease research contributes to the development of diagnostic tools, treatments and cures, as well as improved health and social care for patients and their families.

What is a rare disease?

A rare disease, also referred to as an orphan disease, is any disorder that affects a small percentage of the population.

Although the disease may be rare, patients and families share a common struggle.

 

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Significance

Spreading awareness about rare diseases is significant because 1 in 20 people live with a rare disease at some point in their life.

Despite this, there is no cure for the majority of rare diseases and many go undiagnosed.

Background

The day was first launched by EURORDIS and its Council of National Alliances on February 29, 2008, a rare date that comes only once in four years.

Since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.

The campaign started as a European event and has progressively become a world phenomenon, with the USA joining in 2009 and participation in 94 countries all over the world in 2017.

Rare Disease Day in India

  • A one-day conference was held in India on February 28, 2018 to mark the ‘World Rare Disease Day’.
  • The conference was inaugurated by Union Minister for Health & Family Welfare, JP Nadda.
  • On the occasion, the Health Minister revealed that the government has formulated a national policy for ‘rare diseases’.
  • He also stated that the process of preparing a Registry of rare diseases has also been initiated by the Ministry.
  • The Indian government has also constituted a body to focus on the rare disease area of healthcare.

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Read more Current Affairs on: World Rare Disease Day , Rare Diseases , Rare Disease in India

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