Sakshi Education
World rare disease day is observed on 28/29 (last day of) February. The day aims to raise awareness for the millions of people who are impacted by a rare disease.
It aims to educate people about rare diseases and their impacts.
Theme:
The theme of the day is "Reframe Rare". The theme encourages everyone to take steps to clarify many of the misconceptions that can make people with rare diseases feel isolated and affect the quality of care and support they receive. The Slogan for 2020 is "Rare is Many. Rare is Strong. Rare is Proud."
Rare disease:
Any disease that affects fewer than 200,000 people is considered a rare disease in the United States. This definition is derived from the Orphan Drug Act of 1983. There are more than 7,000 rare diseases that affect 25-30 million Americans. 1 in 20 people are dealing with a rare disease. These people struggle to receive a proper diagnosis, find information and get treatment.
History:
Theme:
The theme of the day is "Reframe Rare". The theme encourages everyone to take steps to clarify many of the misconceptions that can make people with rare diseases feel isolated and affect the quality of care and support they receive. The Slogan for 2020 is "Rare is Many. Rare is Strong. Rare is Proud."
Rare disease:
Any disease that affects fewer than 200,000 people is considered a rare disease in the United States. This definition is derived from the Orphan Drug Act of 1983. There are more than 7,000 rare diseases that affect 25-30 million Americans. 1 in 20 people are dealing with a rare disease. These people struggle to receive a proper diagnosis, find information and get treatment.
History:
- The World rare disease day was first launched by the European Organization for Rare Disorders (EURORDIS) and its Council of National Alliances on 29 February 2008, a rare date that comes only once in four years.
- Since then the day is observed on the last day of February. In 2009. the US joined with EURORIDS. By 2017, over 94 countries joined the alliance.
- The official sponsor of the day is the National Organization for Rare Disorders (NORD) in the United States and EURORDIS. The sponsors organize the official international campaign.
Published date : 02 Mar 2020 11:44AM
