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 - patientworthy.com/contribute… - OR let us know if you'd like to work with a writer.
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Early findings from a Phase I/II clinical trial suggest that a novel medication, selcodebart, may help reduce dependence upon blood transfusions in patients living with myelofibrosis-associated anemia. Read more here, or at patientworthy.com! patientworthy.com/2026/09/30…
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Early findings from a Phase I/II clinical trial suggest that a novel medication, selcodebart, may help reduce dependence upon blood transfusions in patients living with myelofibrosis-associated anemia. Read more here, or at patientworthy.com! patientworthy.com/2026/09/30…
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Singapore has officially approved Wegovy for another indication: the treatment of moderate-to-severe, noncirrhotic MASH (metabolic dysfunction-associated steatohepatitis). Read more here, or use the link in our bio! patientworthy.com/2026/09/29…
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The future for recovery and repair of PNIs (peripheral nerve injuries) and SCIs (spinal cord injuries) is looking brighter than ever, as advances in stem cell research continue to open promising new avenues. Read more here, or click the link in our bio! patientworthy.com/2026/09/25…
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We're honored to bring you Stephen's story of living with esophageal cancer, and how finding support through his community and sharing his story have helped him stay positive and find meaning. Read here: patientworthy.com/2026/08/11… #PatientWorthy #ShareYourStory #Cancer
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We're honored to share Nick's story as an MS patient, and how his journey led him to create "ms life," which helps to support other people living with the condition. Read here: patientworthy.com/2026/08/08…
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Today our spotlight is on Christoph Muth, a German man currently residing in Thailand. Christoph is living with a rare combination of progressive neurological and sensory disorders, and hopes to find help at a rare-disease research facility. Read here: ow.ly/eQIg50ZvVOu
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We're honored to share this interview between Dr. Thaker and Kate, an ovarian cancer patient, as they discuss life with ovarian cancer and treatments. Read here: ow.ly/YhO850Zm8lY
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New reports suggest that Attruby, a treatment for ATTR-CM, may also help preserve the kidney function of patients living with the condition. Read more here: ow.ly/9iFt50ZlevI #PatientWorthy #ShareYourStory #ATTRCM #ATTR #Amyloidosis #Attruby
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We're honored to share another article from our friend Tom Seaman, who's back with advice about living with dystonia and anxiety. Read here: ow.ly/TpZU50ZiL7R
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Finding Balance: David and Charice's Journey with Parkinson's Disease bit.ly/3QiTbgf Read about David's diagnosis and both his and Charice's navigation through life with Parkinson's disease now at PatientWorthy.com #PatientWorthy #Parkinson'sDisease #PatientStory
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We're honored and thrilled to bring you this article by Dr. Avishek Kumar, discussing breaking news on how pancreatic cancer treatment has potentially been changed forever. Read here: bit.ly/4x5u2pX #PatientWorthy #Cancer #PancreaticCancer #ShareYourStory
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Caplyta Gains FDA Approval for Schizophrenia Relapse Prevention with Significant Clinical Benefit bit.ly/4wIdd3V Read now at PatientWorthy.com #PatientWorthy #Schizophrenia #Caplyta
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Votoplam Advances to Phase 3: Novartis and PTC Chart Measured Path for Huntington's Disease Treatment bit.ly/4nFdZKZ Read now at PatientWorthy.com #PatientWorthy #Votoplam #Novartis #PTC #Huntington'sDisease
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Attruby Emerges as a Compelling Alternative to Vyndamax in Cardiac Amyloidosis Treatment bit.ly/3Rn5RmA Read now at PatientWorthy.com #PatientWorthy #VYNDAMAX #ATTR-COM #CardiacAmyloidosis #Attruby
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RNA-Targeting CRISPR: A Breakthrough Approach to Inhibiting Hepatitis E Virus bit.ly/3PRqkzk Read now at PatientWorthy.com #CRISPR #PatientWorthy #HepatitisE
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Breaking Through: UniQure's Huntington's Gene Therapy Pursues UK Approval After US Setback bit.ly/4f1KjWo Read now at PatientWorthy.com #PatientWorthy #UniQure #Huntington'sDisease
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Merck and Exelixis Team Up to Transform Treatment for High-Risk Colorectal Cancer Patients bit.ly/4dBbqVQ Read now at PatientWorthy.com #PatientWorthy #ColorectalCancer #Keytruda
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Breakthrough Recognition: Atossa's (Z)-Endoxifen Earns FDA Rare Pediatric Disease Designation for McCune-Albright Syndrome bit.ly/3ROjdrT Read now at PatientWorthy.com #PatientWorthy #(Z)-Endoxifen #McCune-AlbrightSyndrome
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Expanding Hope for Rare Skin Disease: CHOP Becomes Sixth Treatment Center for Revolutionary ZEVASKYN Gene Therapy bit.ly/3R8jHJr Read now at PatientWorthy.com #PatientWorthy #CHOP #EB #ZEVASKYN #GeneTherapy #RDEB
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