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Share Your Story

In honor of Rare Disease Day, NORD invites the rare disease community to show their stripes! The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct. While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite the rare disease community together to raise awareness. In the spirit of raising the profile of the rare disease community at large and celebrating Rare Disease Day, this year NORD will promote specific ways that individuals, organizations and groups can show their stripes.

Show Your Stripes by sharing your personal story!


In order to submit a story, please review the story-telling tips and content guidelines, then proceed with submitting your story by using the form at the bottom of this webpage.

Story-Telling Tips & Content Guidelines

Story-Telling Tips


– Stories should be about 500-1000 words

 Bring your own personality into the story

 Try to explain things in a way that anyone can understand with any level of prior knowledge

 Use complete sentences

 Include a photo to help personalize your story

Content Guidelines


The submission form includes the following questions. To help you prepare your story before sending in your submission, spend some time thinking about how you would respond. 

(1) Answer four of the “W’s”: Who is this story about, what rare disease are they impacted by, when and where did their journey with rare diseases begin?

(2) Explain the overall experience in living with this rare disease. What was the diagnostic odyssey like and how has the healthcare experience been for you since diagnosis?

(3) Look into the future: What does the future of this disease look like?

(4) Answer the last “W” and How: Why is Rare Disease Day important to you? How are you planning to get involved in 2019?

Submissions

  • Who is this story about? What rare disease are they impacted by? When and where did their journey with rare diseases begin?
  • Explain the overall experience in living with this rare disease. What was the diagnostic odyssey like and how has the healthcare experience been for you since diagnosis?
  • What does the future of this disease look like?
  • Why is Rare Disease Day important to you? How are you planning to get involved in 2019?
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    In these Standard Terms and Conditions, “Your Content” shall mean any audio, video, text, images, or other material you provide or display. By providing Your Content, you grant NORD a license to use, reproduce, adapt, modify, publish, translate, and distribute it in our marketing materials and to all media. Your Content must be your own and must not invade any third‐party’s rights. When you submit content or information to NORD it means that you are allowing the public to access and use that information, and to associate it with you. NORD reserves the right to remove Your Content at any time, without notice. We take your privacy very seriously. Subject to the Terms and Conditions above, NORD will never sell or disclose your personal information.