How to Observe Rare Disease Awareness Day

I admit that I cannot resist the rare disease zebra branding. It's cute; zebras are close enough to horses to make my horse girl self happy, and unlike other rather specific merchandise for various causes and days, I will actually wear a cute zebra shirt all year long.

Zebra is the symbol for rare diseases

Zebras became the go-to symbol for rare disease because of the medical saying that doctors should "think horses, not zebras" when looking at patient symptoms – some of us, however, are indeed zebras!

I have somehow ended up with a few zebra shirts (of course!), zebra patterned pajamas, one or two branded stuffed zebras, a few zebra stress toys, and even more miscellaneous things. Because again, I cannot resist all of it!

So how can you observe the day marked for rare disease and raise awareness?

Be uniquely you

Zebras became the symbol of rare diseases because they are all unique. No two zebras have the exact same markings, and no two people with a rare disease – even those who share a disease – are the same!

Diseases lead to different symptoms and challenges for all and different ways of navigating life. Recognizing and respecting that there is no one way to navigate rare disease life and that your relationship to them may change over time is crucial for thriving while living with rare diseases.

Show what you can do

Observing rare disease awareness day, for me, is, of course, about advocating for my rare disease community when I can. But it's also about the other parts of my life, therapeutic horseback riding and dressage, theater and music, crafts – things that might not be related to having a rare disease or a disability at all but that make my life meaningful and complete.

Advocate for what you need

This week, I requested something from my medical records office but was not given what I requested the first time. I responded with the reasoning behind why what I was given was not sufficient and why it was a problem to assume that it would suffice. I reiterated the fact that patients are knowledgeable about what is needed and we don't request documentation we don't actually need!

Give yourself a break

Give yourself room away from the rare disease advocacy space if you need it. Know that there will always be room for you to come back in whatever way feels right. Know that you don't owe yourself, or anyone else, time or brain space you can't devote to advocacy efforts.

So on this rare disease awareness day (an ultra-rare day in 2024 being a leap year!) I will be wearing my newest zebra acquisitions (the zebra is even purple, the awareness color for one of my rare conditions!) and hoping that all of us in the rare disease community can show who we are in the ways that feel most authentic to us, both on rare disease awareness day and always.

What does rare disease awareness day mean to you? Share in the comments below!