Rare Disease Day is observed on the last day of February. It raises awareness about rare diseases that are not commonly known, it aims to make treatment and medical representation more accessible for people who suffer from a rare disease, and to give their families more resources to learn about the diseases and how to care for their loved ones. There are currently around 7,000 known rare diseases in the world, but the general public is still not well-educated on them, and treatment for them is often inadequate. Rare Disease Day organizers advocate changing this.
Rare Disease Day was created by the European Organisation for Rare Diseases on February 29, 2008, and was observed by several European countries and Canada. The EURORDIS picked February 29 because it is a rare day, as it only happens every four years. However, Rare Disease Day is celebrated even if it's not a leap year, it is just observed on February 28 instead.
The EURORDIS created Rare Disease Day because they believe it is important for sufferers of rare diseases to feel represented. At the same time, there is not sufficient adequate treatment for many rare diseases and there is also a lack of support from experts and social networks to the afflicted and their families. Rare Disease Day has since become a global observance, which means that awareness of these issues can reach more people so hopefully changes can start happening.
It was in 2009, when Rare Disease Day reached the United States, that it became truly international, with the country organizing several events and campaigns that raised exposure for this observance. Rare Disease Day reached even more people when President Barack Obama proclaimed his support for the day in 2013.
What is a Rare Disease?
In the United States, a rare disease is defined as something that affects 1 in 200,000 people, putting in perspective how rare it is to find someone with one of these conditions. Unfortunately, this means that there often isn't a treatment for these diseases, or if it exists it is often expensive and inaccessible for many people around the world. Sometimes there is only one expert on the disease in the whole world, which means that families have to spend a lot of money traveling and paying for expensive treatment.
Rare Disease Day joins the voices of rare disease sufferers together to raise awareness about their burden and uphill battles, in the hopes that there will be more resources and financial support put towards researching and treating these diseases.
How to Observe Rare Disease Day
Even though there have been many efforts to raise awareness about rare diseases, most people are still unaware of them and the struggles of people who suffer from them. Do your part by sharing stories of people with rare diseases on your social media, with family and friends. Do it by using the hashtag #RareDiseaseDayUSA to join your voice with others who are bringing these issues to light.
If you know anyone with a rare disease or would like to help with treatment and research in the future, there are many ways to educate yourself on this matter. In the United States there are big events and activities happening across many states, such as conferences, walks, fun runs, and exhibitions that anyone can attend.
Show your support to the plight of people with rare diseases by donating to NORD, the official US sponsor of Rare Disease Day which provides resources and helps people with rare diseases and their families.
In Canada, you can check out CORD (Canadian Organization for Rare Diseases) for a program of events and activities that are taking place.