Patient Worthy
@PatientWorthy
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We're a resource for engaging, informative content and rare patient news, well done.
Joined April 2015
At Patient Worthy, we aim to publish the realities of #RareDisease. Your voice is integral to achieving that goal. Would you like to contribute and share your story? You can submit here - - OR let us know if you'd like to work with a writer.
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Sierra Domb on Visual Snow Syndrome: A Journey of Resilience, Medical Trauma, and Advocacy. Read now at
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Idiopathic multicentric Castleman’s disease (iMCD) treatment found by AI tool Read now on
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Meet Christopher who was diagnosed with Prostate Cancer. He would like to support others during their cancer journey. He wants you to know you are not alone in this journey. If you would like to share your story check out the link in our bio.
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Protecting the heart against a variety of cardiovascular illnesses is the role that a well-maintained heart plays. In addition to problems like heart attacks and strokes, conditions like excessive blood pressure are directly related to the health of the heart. #heartmonth❤️
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FDA Approves the first Mesenchymal Stromal Cell Therapy to Treat the Graft Versus Host Disease in Adults and Children. Read now on
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Our new partnership with PATIENT WORTHY is a new exciting journey we want YOU to be a part of! Be sure to check out what's new and subscribe to our free monthly newsletter. #whatnext #patientworthy #shareyourjourney #communityforum
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Tube Feeding awareness week: A tube feeding champion Read David's story now at
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Autumn's journey with Dermatomyositis and Lupus Read now on
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To end this week, we'd like to thank the Patient Worthy community for welcoming WHATNEXT! Today, we are so happy to introduce Virginia who was diagnosed with a rare adenocarcinoma: Extramammary Paget's Disease. To read more of her story, click here:
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There are Fewer than 20,000 cases of Cholangiocarcinoma per year in US. If you are interested in sharing your healthcare journey with Cholangiocarcinoma, click the link in our bio.
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Living with MASH/NASH can be confusing, but Patient Worthy is here to help! Together, let's unpack what it means to live with MASH, and how sharing your story can help both you and others with similar experiences. #ShareYourStory with the link below:
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As we continue to celebrate our partnership with Patient Worthy, we are so happy to introduce Tori who was diagnosed with fibrolamellar hepatocellular carcinoma, a rare form of liver disease, in 2021. There was a sweet twist though... To find out more:
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Seasonal Affective Disorder and what we can do about it Read now on
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Patient Worthy Launches Cancer-Focused Companion Site Read about our exciting new partnership at
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In recognition of World Cancer Day and the announcement of the partnership with our companion site, WHATNEXT, we are so pleased to introduce you to Bob & Eva. Please read their story here:
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We are now officially companion sites with an oncology focused site called WHATNEXT!! WHATNEXT is for everyone who has been affected by cancer, and it provides a space where people feel seen, heard, and valued. Let your journey be the conversation!
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We are TWO days away from a very exciting announcement regarding a new partnership with new opportunities for growth! 📣🎉
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Our BIG announcement is on its way! Check out our socials and head to our website on February 4th to learn more! #oncology #cancer #PatientWorthy
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Zebra Warriors💪 If you are interested in sharing your healthcare journey with Ehlers-Danlos syndrome or hypermobility spectrum disorder, click the link in our bio.
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