5 Ways to Celebrate Rare Disease Day
Whether you have a rare disease or love someone with a rare disease, you should celebrate Rare Disease Day. Here’s why! Later in this post, I’ll explain how.
Why Celebrate Rare Disease Day
Personally, Rare Disease Day is very two-fold for me:
I see it as a day to raise Rare Disease Awareness. 1 in 10 people live with a rare disease!! When you look at it that way, it’s really not so rare anymore. I’ve talked about it on Instagram, but the first-ever treatment for FA was just approved! (I’m working on a blog post about my experience, but for now, just know I’m LOVING it.) I know we would not be where we are today without rare disease advocacy, which just adds fuel to my passion for raising awareness for rare diseases.
I also see this day as a time to be so proud of yourself and how far you’ve come. Every rare disease patient has a wildly different story, complete with their own set of challenges they’ve had no choice but to overcome. So, Rare Disease Day is a day when you should take a step back and take pride in your rare life.
Five ways to celebrate rare disease day
1. Show your zebra stripes
The National Organization for Rare Disease (NORD) has a campaign called Show Your Stripes where they encourage Rare Disease patients to embrace the zebra and wear zebra stripes. I, for one, adore the zebra, and will 100% be participating. I have a bunch of zebra items in my shop, including these stickers, this tote bag, this t-shirt, and more! ICYMI, I spoke about why the symbol for rare disease is a zebra, or you can read about it, here. Here, I linked my zebra-print faves from Amazon. These pajamas are at the top of my list. (No tacky zebras for me)
2. Treat yourself to a zebra-themed treat
One year, a good friend of mine brought me a cupcake with a zebra on it. This simple gesture is so meaningful and instantly adds a little pizzazz to the day. Go to your local bakery and look for anything zebra-themed. When in doubt there are always zebra cakes.
3. Shop for some rare disease merchandise
I may be biased (ok, definitely biased), but I think my rare disease merch is the cutest. I mean, that’s why I started making it. I wanted rare disease merch that felt a little more classy and elevated and included subtle zebras. Hopefully, you love it all as much as I do! You can shop all my rare disease items here.
4. Post your story on social media and interact with other rare disease advocates
One of the most beautiful things about the rare disease community is knowing you’re not alone. Sharing your story on social media and utilizing hashtags, like #raredisease or #rarediseaseday, can help you connect with others in the community, and help you realize your feelings are valid; you are not the sole person navigating a rare disease.
5. Download this free Rare Disease Day Card
I’ve designed a card for you to celebrate the day! You can either print it out or email it to a friend wishing them a Happy Rare Disease Day. Click here to get the free download.
Note for people who love someone with a rare disease:
It means the world to show up for your person on rare disease day. I have a friend who has always done something little for me on this special day. One year, she brought me a cupcake with a little zebra, and one year she bought me a little rare disease awareness mug, and one year a card with a handwritten note. It doesn’t have to be a huge thing, but showing that you remember and care it’s an important day for your friend or loved one is unforgettable. I made a TikTok about this, ICYMI <3
*Some of the links I provided I make a small commission from. This doesn’t affect the cost for you at all.
Happy Rare Disease Day from me to you!! xx
Kelly
