Advocates Ask that the Same Effort Used for COVID Drug Discovery Be Used for Rare Diseases

Dr. Christopher Austin, a National Institute of Health Director for Transitional Sciences, spoke at last year’s virtual conference honoring Rare Disease Day. According to an article in the NIH Record, Dr.…

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An Innocent-Looking Shadow on Her Thumbnail Turned Out to be Subungual Melanoma
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An Innocent-Looking Shadow on Her Thumbnail Turned Out to be Subungual Melanoma

Maria’s message is: “when in doubt, get a biopsy." Ten years ago, Maria Sylvia noticed a vertical streak on her thumbnail that at the time she thought was “cool." She…

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Investigators Introduce Tool for Establishing Gene-Disease Relationships in Rare Disease
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Investigators Introduce Tool for Establishing Gene-Disease Relationships in Rare Disease

  According to a recent article, investigators have proposed a checklist that will aid in determining the strength of potential gene-disease relationships for rare disease. The Need It has already…

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Survey of Healthcare Providers Articulates What They Need to Improve Rare Disease Care
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Survey of Healthcare Providers Articulates What They Need to Improve Rare Disease Care

Definitive Healthcare launched a survey in November 2021 to help physicians, researchers, and the rare community understand what the biggest challenges are for providing a rare disease diagnosis and treating…

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ERN-RITA Enables Virtual Health Consultations With European Experts
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ERN-RITA Enables Virtual Health Consultations With European Experts

Note: this story was originally published by HAE Junior, a Patient Worthy partner Interview with Malena Vetterli from the European Reference Network (ERN-RITA) for rare immunodeficiencies, autoinflammatory and autoimmune diseases.…

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Achieving Optimal Patient Outcomes in Chronic Pain Management Across Multiple Treatments: Part Two
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Achieving Optimal Patient Outcomes in Chronic Pain Management Across Multiple Treatments: Part Two

Written by Sumeet Maniar, CEO, WellBrain Continued From Part One Monitoring Adherence to Non-Opioid Treatments Given the links between chronic pain and mental health, a large part of managing chronic…

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Virginia Tech’s Carilion School of Medicine Has Put a Special Focus on Rare Disease

Currently, 95% of rare diseases don't have an effective treatment. Progress is being made, but there is just so much ground to cover in rare disease research. Studying rare diseases…

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Achieving Optimal Patient Outcomes in Chronic Pain Management Across Multiple Treatments: Part One
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Achieving Optimal Patient Outcomes in Chronic Pain Management Across Multiple Treatments: Part One

Written by Sumeet Maniar, CEO at WellBrain In the U.S., 60 percent of all adults have a chronic disease, and 40 percent have two or more. Chronic diseases, which often…

Continue Reading Achieving Optimal Patient Outcomes in Chronic Pain Management Across Multiple Treatments: Part One