Share Your Story

We are in the business of advocating for patients, especially those with rare conditions and chronic illnesses. Sharing stories, cultivating experiences, providing the latest medical findings—connecting people and pioneering production of “Patient Worthy” information is in our DNA. Is it in yours?

If you feel passionate about a particular post, just want to share an experience, a favorite recipe, exercise, product or even an app, tell us about it by signing up and submitting content here. If you aren’t sure you want to contribute content, but are or have a loved one living with a rare disease, creating a profile also allows you to subscribe to conditions that matter most to you and your family.

We’d love to feature your unique perspective on Patient Worthy. You must be 18 years or older to submit your story. If you are under 18, but over 13, and would like to contact us, you may e-mail us with your parent or legal guardian’s information. We look forward to hearing from you!

Click here for our Terms of Use.

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

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