Are you a rare disease patient or advocate? We want to hear from you!

Email: Kathryn Devanny, Advocacy Relations Director

Do you have a rare disease and want to share your story?

Patient Worthy is looking for smart, passionate, patients/caregivers/support persons to author original content. We believe in empowerment through education, awareness and dialogue, and we need your help to keep the conversations going.

If this sounds like you, contact us at

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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