Share your story with us and the rare community

Your story is your power, so share it far and wide!

If you enjoy blog writing and would like to share your lived experiences, we highly encourage you to write for our blog.

Why sharing your story is important

Telling your personal story of how rare disease has touched your life is not only cathartic, but also crucial to breaking the isolation felt by those in the rare community. Getting diagnosed with a rare condition overwhelms, frightens and isolates. Sharing how you handled a shock diagnosis and resulting life changes will reassure others that they are not alone. You will validate that it’s okay to feel a range of emotions pre- and post-diagnosis. You will normalise reactions to challenging situations and spread a message of hope that a brighter tomorrow lies ahead.

How rewarding is it to know that others will read your story and think that’s me! That’s what I’m going through. I never thought someone else felt that way or experienced this!

Story sharing is how we can connect as a community and find the strength to continue on our individual journeys. Sharing your story to help others is how you can ensure that no one faces their rare journey alone.

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I did this for Beacon and loved it so much. We have so much in the rare community that we can learn from each other. Not only that, but inspiring, encouraging and giving hope to others through your story is extremely fulfilling.

I would highly recommend it to anyone who might be interested in writing. 

Becky Tilley

KVDS Mom and Kool Person

Ready to write for our blog?

Get in touch with our team to learn how to share your story today.

They’ll email you our Guest Blog Guidelines and answer any questions you may have about publishing a guest blog post on our website.

Please note: We don’t accept sponsored posts

We look forward to sharing your story soon!