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

When will my story be shared?

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.

Can I submit multiple stories?

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

I am a caregiver to someone with a rare disease diagnosis. Can I still share my story?

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

Do I need to submit a photo or video with my story?

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.

Your Information

Name(Required)

First Last

Preferred Pronouns(Required)

If other(Required)

Connection to Rare Disease

If other...

Email(Required)

Address(Required)

Street Address Address Line 2 City State / Province / Region ZIP / Postal Code Country

Campaign Interest(Required)

Rare Disease Day

How has your life been impacted by rare disease? Please share if you are a patient or a caregiver and which rare disease has affected your life.

Why is Rare Disease Day important to you?

What is one thing you'd like the public to know about rare disease and the challenges patients and caregivers face?

The global theme for Rare Disease Day is "Health Equity." What does equity in health mean to you?

How will you be showing your stripes for Rare Disease Day?

Your photo(s), video(s) or audio recording(s)

Videos should be under 2mins and in .mov or .mp4

Drop files here or

Accepted file types: jpg, jpeg, png, mov, mp4, Max. file size: 256 MB.

General

Who is this story about and what rare disease are they impacted by? When and where did their journey with rare disease begin?(Required)

Explain the overall experience in living with rare disease. What was the diagnostic odyssey like?(Required)

What does the future of this disease look like?(Required)

Tell us about yourself! What are your hobbies, interests, or passions?

Why did you share your story? Do you think it may impact others?(Required)

Your photo(s), video(s) or audio recording(s)

Videos should be under 2mins and in .mov or .mp4

Drop files here or

Accepted file types: jpg, jpeg, png, mov, mp4, Max. file size: 256 MB.

Rare Cancer Day

Tell us your first name, where you are from and the name of the rare cancer that has affected your life impacted you.

What is the one thing you'd like people to know about what it is like to live with a rare cancer?

What does “diagnostic access” mean to you?

Please submit any images, videos or documents that help tell your story.

Images must be under 2MB and in either jpg, png, pdf, jpeg, doc, docx, mov, or mp4 format.

Drop files here or

Accepted file types: jpg, png, pdf, jpeg, doc, docx, mov, mp4, Max. file size: 50 MB.

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Share Your Story

Frequently Asked Questions

Your Information

Rare Disease Day

General

Rare Cancer Day

Terms & Conditions