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Our Partner Organizations

Patient Worthy

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

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

At Patient Worthy, if they are not learning to live with a chronic illness or rare disease themselves, they are loving or working with someone who is. It is through this perspective, research and their passion for rare disease awareness that they bring you Rare Patient News - Well Done.®

Our Impact since our inception...

  • Dollars Raised

    Over 12,000,000 dollars for research!

Thank you to our generous sponsors.

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