Patient Worthy® is an online publication that provides relevant information to rare disease patients, caregivers and advocates alike.

We connect those impacted by rare conditions with educational resources, advocacy groups, and news updates regarding rare disease research from across the globe. Our goal is to amplify the voices of those in the rare disease community, feature the institutions that serve them, and foster solidarity across diagnoses.

Here at Patient Worthy, if we are not learning to live with a chronic illness or rare disease ourselves, we are loving or working with someone who is. It is through this perspective, research and our passion for rare disease awareness that we bring you Rare Patient News. Well Done.®

Want to tell us about your “patient worthy” experience?

We share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Join us, by telling us a little bit about yourself!

Become a contributor by submitting your story here or contacting us for an interview at contribute@patientworthy.com.  Keep up with the latest news, stories, and event coverage by following us on Twitter,  Instagram, and Facebook. And of course, let us know your thoughts on our posts in the comments section below each article.

Are you in rare disease advocacy?

Become a partner! We are happy to feature your events on our events page, highlight patients, research or fundraisers. Contact Kathy@patientworthy.com for details.

We’re here for your feedback, so that we can be the best source of rare disease information for you. E-mail ideas@patientworthy.com to submit suggestions.

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