National Rare Disease Day
National Rare Disease Day:
Observed on the last day of February, every year. National Rare Disease Day is an annual observance.
|2020||29th February||Saturday||United States|
|2021||28th February||Sunday||United States|
|2022||28th February||Monday||United States|
Why Rare Disease Day?
The main objective of Rare Disease Day is to create awareness among the public to be aware of such diseases and to honor the explorers and scientists for their extraordinary contributions in this regard. This day is to promote and raise funds that would help people affected by rare diseases. This day is observed as an international event right from the year 2013.0n this Day, NORD (National Organization for rare disorders) in coordination with several communities and other non-profit organization provide advocacy for the sufferers.
How we can Observe National Rare Disease Day:
Campaigns and events have been arranged on this day to raise funds to cope up the needs of patients. Make your contributions if possible, even a single penny could attribute to save someone’s life. Use this #RareDiseaseDay to discuss further. You can also post if you suffer from any disease and this hashtag would definitely help you in some way. Honestly speaking, people are there to help; but sadly, we could not reach them at times. Several Non-Profit organization suffer a lot to take over this job for you. Approach them for benefits. A Strong willed person could fight any kind of hardships. So, all is well.TC.
Interesting Facts About National Rare Disease Day:
1.Rare disease is also denoted as “orphan disease”.
2.There are approximately more than 6000 rare diseases that affect around one in every 10 Americans. Moreover, the fact is, Children are frequently affected.
3.Many of the rare diseases do not produce any early symptoms, so identification becomes harder.
4.There is no proper medication or treatment to cure around 95 percent of the rare diseases. This is due to misdiagnosis during the early stages. As we all know, any advanced stage disease is difficult to be cured. This is one of the main reasons for the loss of lives.
5.In 2013, Barack Obama, the then president of the United States has extended his support by releasing a letter.
6.On this day, the European parliament have an open session in which all issues pertaining to overcome rare diseases will be discussed.
7.More than 25 million Americans have rare diseases, a study reveals. Moreover, every Year, a rare disease is identified. Biggest drawback is the lack of treatment eventually leading to proliferation of such diseases.
8.80 percent of the rare diseases are genetically spread.
9.Few identified rare disease are Angelman Syndrome, Crouzon syndrome, Gaucher disease, marfan’s disease, Hurler Syndrome, Acute Lymphotic Leukemia, Neurofibromatosis, Sanfilippo Syndrome, Sickle cell Anemia, etc. The above diseases affect mostly children and the reason for the occurrence remains unknown.
History of National Rare Disease Day:
Rare disease day becomes an international event after the United States joined this campaign, which was already proclaimed by the European organization for rare diseases and observed by several countries like Canada, United Kingdom, China, Australia etc. We observe this day right from the year 2008 or 2009 and the day was chosen just because February 29 (Last day of February) itself a rare day. During Non-leap years, February 28 (Last day of February) is chosen as rare disease day. National Organization for rare disorders (NORD) hosts several campaigns, events, promotion programs in schools and colleges in order to promote day for awareness.