February 28th marks Rare Disease Day. Launched by EURODIS and the Council of National alliance, Rare Disease Day was chosen to take place on February 29th, the rarest day of the year. This observance day seeks to raise awareness for the many people living with some type of rare disease. Additionally, supporting ways to bring about change regarding the outlook of these conditions is another major goal of Rare Disease Day. According to the NIH, there are a total of 7000 known rare diseases impacting the lives of 25-30 million Americans. In celebration and recognition of today, we’re sharing a few tips to help you commemorate this unique occasion!
1. Learn about rare diseases
As the name suggests, the diseases being highlighted today are rare. But what exactly makes them rare? In the US, a disease is considered rare when about less than 200,000 people in the US have it. Depending on the country, the qualifications for what is and isn’t a rare disease varies. The overall consensus is that for a disease to be considered rare, it cannot be found in the majority of a population. Some types of rare diseases are well known, such as multiple sclerosis and cystic fibrosis, while others not so much. Similarly, some more well-known rare diseases have treatment options, while others don’t.
2. Read stories from people with rare diseases
One way to become more informed on rare diseases is to read/hear stories from people that live with these conditions. Given the novelty of many of these conditions, it can be difficult to hear these experiences since there’s very few people experiencing them. That’s why finding the stories published online and giving them a read can make all the difference.
3. Uplift voices of people who have rare diseases
On social media and in other areas of our lives, it is important that everyone has the opportunity to share their voice. When it comes to situations like rare diseases, it can be challenging for individuals that have these conditions to speak out. Many times they get pushed to the side due to the small number of them there are. In this case though, small does not equal insignificant. This is why it is important to amplify and uplift the voices of those who have rare diseases to give them a chance to speak.
4. Donate to charities that support the cause
If possible, donating to charities that support research and treatment options for rare diseases is a fantastic way to help There are many different charities out there, some specific to a rare disease while others encompass the general notion. Donating to these causes is a great way to help advance the research necessary to help us understand how these diseases come about and what can be done to stop them.
To learn more about how you can help celebrate Rare Disease Day, be sure to check out https://www.rarediseaseday.org/, a website dedicated to raising awareness for all rare diseases and a great place to find other organizations that help support this cause.