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Rare Disease Day is about creating a “community that is multi-disease, global, and diverse– but united in purpose.”
Rare Disease Day was started in 2008 to build an international community focused on healthcare and awareness of the 7,000+ rare diseases that impact the lives of over 300 million people worldwide. The diseases may be rare, but the fact that people experience them is all but such, so on February 28th, we take this time to acknowledge those affected and raise awareness so that we can erase the stigma and provide more access to resources and opportunities.
What is a rare disease?
A rare disease is a disease or condition that affects less than 200,000 people or 1 in 1,500 people. Unfortunately, out of the 7,000 rare diseases, few are curable or preventable, and most are chronic, with over 70% being genetic.
The rarest rare disease is Stoneman Syndrome, also known as Fibrodysplasia ossificans progressiva, a condition where muscle and connective tissue are slowly ossified and replaced by bone. It affects 1 in 2,000,000 and people like Joe Sooch, who is featured in a 2022 People article, are using social media to bring more awareness to the rare disease.
There are “more common” rare diseases such as Ehlers –Danlos Syndrome (EDS), Sickle Cell, Cystic Fibrosis, Duchenne Muscular Dystrophy (DMD), and Haemophilia that affect more of the population. However, most are all still complex conditions without cures or even formal treatment and those with the diseases have to deal with the multiple every day challenges the come with their conditions.
How to show your support?
Whether you have a rare disease or want to show your support, you can get involved in this great campaign in many ways.
Show your colors. The Rare Disease Day theme for 2023 is “Share Your Colors.” The colors associated with Rare Disease Day are blue, green, pink, and purple. You might see downtown areas or monuments lit up with the color, or you can wear or light them in your home or on social media.
Donate or volunteer. Give your time or donate to local, national, or global organizations doing the incredible work of developing treatments for rare diseases.
Wear your stripes. Since the zebra is the mascot for rare diseases, wearing stripes or WearIt.apparel is the perfect way to show your support and start a conversation. These simple conversations help to raise awareness about the prevalence and challenges of rare diseases. Whether you wear stripes or the colors, you can share your story or support on social media with the hashtags #rarediseseaseday #showyourstripes. The Rare Disease Day campaign aims to achieve equitable access to diagnosis, treatment, health and social care, and social opportunity for people affected by rare diseases. Let’s show support, spread our stories, and wear our stripes proudly. Just because we may experience a rare disease doesn’t mean we are alone. There is a strong global community that beautifully represents our herd.