Scroll
To Top

Share Your Story

NORD invites you to share your story. Join the individuals and families who have contributed their personal accounts of living with rare diseases. Alone we are rare. Together we are strong!

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 did you share your story? Do you think it may impact others?

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 did you share your story? Do you think it may impact others?
  • Drop files here or
    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.