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2023 is the 15th edition of the World Rare Disease Day celebrations. If we read through the US’s Orphan Drug Act of 1983, it describes Rare disease as any disease affecting fewer than 200,000 people. Sadly, at this point, many of these rare diseases are without cures or treatment due to the significant absence of people available to participate in scientific studies. Across the globe, people with rare diseases struggle to receive a proper diagnosis and get treatment. Every year, EURORDIS (The European Organization for Rare Disorders), organizes the Rare Disease Day to increase awareness about the rare medical conditions and to comfort both patients and their family.
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World Rare Disease Day 2023
In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people in the US. This definition was created by the US Congress during the 1983 Orphan Drug Act. In Europe, a disease defined as rare when it affects fewer than 1 in 2,000 people. The World Health Organization (W.H.O.) has suggested that a rare disease should be defined as one with a frequency of less than 6.5 – 10 per 10,000 people. So every country defines a rare disease most appropriate in the context of its own population, the health care system and resources.
In India, there has no standard definition for rare diseases. Considering our population, ORDI (Organization for Rare Disease in India) suggests a disease be defined as rare if it affects 1 in 5,000 people or less. Rare diseases are also known as orphan diseases because drug companies were not interested in adopting them to develop treatments. There are more than 7000+ Rare Diseases are reported across the globe, and 1 in 20 Indians, around 70 million is affected by one of these RDs.
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World Rare Disease Day 2023
The European Organisation for Rare Diseases (EURORDIS) organized the very first World Rare Disease Day held on February 29, 2008. February 29 was chosen because February 29 is a “rare day,” and 2008 was the 25th anniversary of the passing of the Orphan Drug Act in the United States. From 2008 onwards EUROORDIS organizes the World Rare Disease day annually on the last day of February with various awareness programmes across the globe. In India there are 256 Rare diseases are registered with ORDI, a national umbrella organization representing all patients with rare diseases in India. Some of these diseases are:
- Duchenne Muscular Dystrophy (DMD)
- Farber Disease (ACID CERAMIDASE DEFICIENCY)
- Gaucher Disease
- GM2 Gangliosidosis
- Hirschsprung’s disease
- IEM Disorders – (Inborn errors of metabolism)
- Interstitial Cystitis
- Jansen’s metaphyseal chondrodysplasia (JMC)
- Lamellar Ichthyosis
- Lysosomal Storage Disorders
World Rare Disease Day 2023 Theme
The theme for World Rare disease day 2023 is not yet announced.
World Rare Disease Day 2023 Quiz
- Which country enacted the very first country Orphan Drug Act?
Ans: USA
- Which organization started the Rare Disease Day celebration?
Ans: EURORDIS (The European Organization for Rare Disorders)
- How many rare diseases are there?
Ans: 6,800 (In India 256 Rare diseases are registered with ORDI)
- What was the theme for World Rare Disease Day 2021?
Ans: The theme for Rare Disease Day 2021 was “Rare is many. Rare is strong. Rare is proud.“.
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