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Share your Rare Story!

Share Your Story

Sometimes just knowing someone is going through a similar situation makes a person feel better than they would if they experienced the situation alone.  Also, NORD meets regularly with legislators who need and want to know what their constituents are facing.  That’s why NORD wants to share your Rare Stories!

After you submit your Rare Story, the editorial team at NORD considers each carefully. We may contact you once we’ve received your story to get some more information and will notify you if and when your story is published on this website.

 

 

  • We will never distribute your email address publicly but please provide an email address so that NORD's editorial team can follow up with you in case they need more information to include in your rare story.
  • We will never distribute your phone number publicly but please provide a phone number so that NORD's editorial team can follow up with you in case they need more information to include in your rare story.
  • Please send us a story that includes at least 500 words but no more than 2000. Be as detailed as you'd like about your journey with rare disease. In this submission you could provide an update on how you are doing now, what your personal outlook is for the future, your ambitions, or what you would tell someone living with a rare disease.
  • Accepted file types: jpg, png.
  • Accepted file types: jpg, png.
    By checking yes above, you are giving NORD the right to publish this story on the website and share it on social media platforms.