Share Your Story

We want to highlight the incredible people in this community who are helping us improve the well-being of individuals living with rare diseases, and their families. Everyone has their own story to tell, and we want to hear yours!

Looking for inspiration as you submit your own story? Check out our blog to see all currently published stories here.

Frequently Asked Questions

Submitting your story does not guarantee that it will be published on NORD’s blog; we will contact you if we share your story publicly.

Yes! If you have more than one connection to the rare disease community, feel free to submit more than one story.

Absolutely! We encourage anyone with a personal connection to the rare disease community to share their story with us.

While it is not a necessity, we tend to use stories with attachments in our campaigns across our social media channels. If it is not possible to submit a photo or video, we still encourage you to share your story with us for the opportunity to be featured on our blog and across social media.

This form is for rare disease community members to share their stories with NORD. If you are seeking help or assistance, please visit this page to learn more about our patient assistance programs or contact NORD.