Rare Disease Day is a recognition holiday that is seen on the last day in the month of February to raise awareness for rare diseases and improve access to treatment and medical portrayal for people with rare diseases and their families.
The purpose behind this holiday is to bring issues to light about the 7,000+ rare diseases that burden individuals everywhere throughout the world and to advocate for improved access to treatment for patients influenced by these diseases. It started in 2008 as a manner to improve treatment for rare diseases – which as a rule is insufficient.
In 2008, Rare Disease Day was formally propelled on February 29th of that year by various different European countries and by the Canadian Organization for Rare Disorders. This date was picked in light of the fact that it is a leap day and is, consequently, a “rare day” all by itself – an ideal portrayal for a holiday recognizing rare diseases. During this year, members recognized this day by going to press conferences, walks, and different occasions held everywhere throughout the world.
The next year, the recognition of Rare Disease Day was embraced for the first time by various nations. Some of the nations which received it in 2009 incorporate Argentina, Australia, China, Colombia, Panama and the United States of America. Today, many various associations everywhere throughout the world – including support groups and patient advocacy groups – celebrate Rare Disease Day.
The Rare Disease Day Slogan for 2020 is “Rare is Many. Rare is Strong. Rare is Proud”.
It’s a great opportunity to show your help for individuals living with a rare disease to show that rare is many, rare is strong and rare is proud!
Rare is many: Rare is more than 300 million individuals around the world.
Rare is strong: The rare disease community consolidates across borders and diseases to raise awareness and advocate for equity.
Rare is proud: Show your help for the rare disease community with pride!
There are more than 7,000 rare diseases and disorders that affect more than 350 million individuals around the world. In the United States, 1 out of 10 individuals is inflicted with a rare disease – or around 30 million individuals. Of that total, around half of those caused are kids. About 95% of the rare diseases in the world have no cures and don’t have successful treatments accessible.
Rare Disease Day can be celebrated in various manners. Members can join an office that helps patients with rare diseases; they can help others to remember the day by utilizing the hashtag #rarediseaseday in the entirety of their social media postings; they can tell to their story of their difficulties with a rare disease or the difficulties of a friend or family member; they can go to different occasions, raise and hold hands to show solidarity with the individuals who are managing a rare disease; and they can give their time or cash to an association that manages a rare disease.
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