Share Your Rare Story


As someone with a rare disease, no one understands how it affects daily life more than you do! Your unique experiences should be shared with the world, and this is your opportunity to #ShareYourRare

Who? You

What? Your story of living with a rare disease - think about: What is your purpose for writing? What do you want to share about being rare? Stories should be approximately 250-500 words in length.

When? Stories must be submitted by February 27th in order to be published by February 28th

Where? Selected stories will be published onto The Zebra Network website and Facebook page, Miss Allegany County 2018 Facebook page, and made public for sharing across social media platforms. 

Why? To celebrate Rare Disease Day 2018 and help spread awareness about Rare Diseases

How? Submit your story using the online submission form. 10-15 stories will be randomly chosen to be shared. If your story is chosen, you will be asked to submit a picture to be posted along with your Rare Disease story. Before submitting, please review the guidelines, below.

Please Note: you do not have to have Ehlers Danlos Syndrome to submit a story, however, we do request that you have a diagnosed rare disease. 


Please complete the form below

Name *


Stories should be approximately 250-500 words, in length. Remember that people will be reading these stories; What is your goal for writing? What do you want to share about being rare?

Stories should be accurate and true. Because submissions will be published on the internet, please avoid using the names of friends, family, doctors, and anyone else without their permission. 

You do not need to state your diagnosis in order to tell your story. Keep in mind that we learn many lessons through our daily journey with rare diseases.

 Stories must be appropriate for all ages to read. Any stories with foul language or inappropriate connotations will not be accepted. 

By submitting a story, understand that not all stories will be published. 10-15 stories will be randomly selected to be posted in celebration of Rare Disease Day. If your story is not selected, do not fret - it may be posted for rare disease awareness in the future. 

Story submissions will only be accepted through our online submission page. You must be at least 18 years old to submit a story. By submitting your story, you are giving The Zebra Network, and any associated organizations, permission to publish and submit your work on any associated platforms. I understand that my story submission will be made public and others will be able to view, read, and share my story submission.