Wear your Black and White!

According to rarediseases.org, the Zebra is the symbol to represent all rare diseases in the United States. The zebra, with its distinctive stripes, represents the more than 7,000+ rare diseases, including Tarlov Cyst Disease. While there is a Rare Disease Day that exists to raise awareness for all rare diseases, we hope to extend those efforts to specifically focus on TCD for just one day. So, proudly wear your zebra print, black and white stripes on May 16, 2024. Consider wearing striped gear, clothing, zebra accessories and more. Go big to stand out and open up the conversation on this important day!

Create a Challenge!

Challenge your peers, co-workers, friends and family to join in the efforts by also wearing their zebra stripes for the day. Or, see if they will take it one step further by decorating their office, home, room, car, etc. in zebra print!  

Pitch to Media!

Reach out to your local media, either TV, radio or print, to share the word about Tarlov Cyst Disease. At the beginning of May, see if they would be willing to write an article or even have you on their news outlet to share your personal story to help raise awareness and educate the public in your local community on this often unknown disease.  Check out the example Press Release below!

Share on Social!

Share messages and posts throughout the day to advocate, educate and validate. Click and download the graphics below to share your journey and help raise awareness on your social media outlets. (you may need to right-click or long-hold on your mobile device to save). When sharing use the following hashtags: #tarlovday #tarlovcystdisease #invisibledisabilities along with any other personal ones you would like to include!

Share with your Physicians, Friends, and Family!

Consider printing off this one-page flier with a quick overview of Tarlov Cyst Disease to provide to friends, family, doctors, and more to help them better understand what you are going through. While we know this barely scratches the surface, we hope this can be a useful tool when meeting with your specialists that may not be as versed on the topic. This flier is not a formal medical document, should not be used for medical advice, and was not created by the Tarlov Cyst Disease Foundation, but rather written by fellow cysters with the intention to help educate others on the disease. 

Tarlov Cyst Disease Flier (click to download PDF. JPEG also available to save and share on social pages)

Send a Letter

Let's get the word out!  Here's a template you may copy and send to possible advocates.  This could be your favorite celebrity, a trusted physician, a medical researcher, or anyone you believe can help spread the word.  Feel free to change it to suit your needs, and just have some fun with it! Use the example letter below as a template!