On March 24, 2022, the Rare Disease Legislative Advocates hosted its monthly webinar to provide updates on legislation and public policy that is relevant to the rare disease patient community.…
For many rare diseases, the symptoms and experiences of patients are variable. It's extremely rare - if possible at all - to see a rare disease that can be be…
According to an article recently published in Business Wire, Global Genes, a leading advocacy group, released a progress report on rare diseases. The report includes data and studies as…
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.…
Rare disease research itself is often overlooked in the medical sphere, so it's not difficult to imagine how many singular aspects of rare disease research are forgotten about completely. One…
At first, 34-year-old Chris Mee wasn’t too worried about his back pain. In fact, he kind of brushed it off – thinking it could just be sciatica, or aching from…
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…
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…
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…
Bonair Daydreams, an inspirational cardline, was founded by a woman who understands human emotions and exactly what words to say in every moment of joy, grief, pain, and hesitance. 27…
Diagnosing certain conditions can be difficult for many reasons, one of which is the similarity between symptoms of numerous diseases. Doctors can mistake one disease for another, which then impacts…
AstraZeneca has previously submitted a supplemental Biologics License Application (sBLA) for their chronic rhinosinusitis with nasal polyps (CRwNP) treatment, and now, the FDA has responded. In a complete response letter…
In the past, researchers have found it difficult to study leptomeningeal disease, a rare complication of late-stage cancer. Because researchers have lacked modeling systems to effectively study this condition, leptomeningeal…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
The war on opioids inadvertently became a war on severely ill patients. The "war" had to be declared. There were reactions from all fronts to the realization that deaths rose…
Because there are so many rare diseases that we still have so much to learn more about, there are many instances where we believe that diseases overlap or are variations…
Patient Worthy is a partner of Personalize My Medicine, which is dedicated to a patient-focused approach to medical innovation and research. PMM can help you organize a personalized approach to…
Note: This is part two of a two part story. Don't forget to go back and read part one! Meghan O’Rouke, the author of the NYT best-selling book Invisible Kingdom,…
Researchers from Australia’s Garvan Institute have joined with collaborators in Israel and the UK in identifying neuromuscular and neurological genetic diseases that have been difficult to diagnose due to the…
According to a recent article, a new study looked into the histopathologic spectrum of patients with monoclonal gammopathy of renal significance (MGRS). Monoclonal Gammopathy of Undetermined Significance (MGUS) Monoclonal gammopathy…
Too often a woman’s heart disease is labeled as stress and anxiety. If it is an autoimmune disorder, it is labeled as depression. Ovarian cysts are overlooked. The Katz Institute…
On February 23, 2022, the National Organization for Rare Disorders (NORD) held a webinar titled "Advancing Equity in Rare Healthcare." The program was organized in collaboration with the Rare Disease…
February 28, 2022 is celebrated annually as Rare Disease Day. This is a major event for the rare disease patient community that helps spread awareness and shine a light on…
According to a recent article, Trialbee and ERGOMED have partnered to become the platform for patient recruitment for their new Rare Disease Innovation Center. Trialbee Trialbee is the leading platform…
Eosinophilic-associated disorders are a group of conditions characterized by heightened levels of eosinophils, which are a type of white blood cell within the immune system. One of these disorders is…
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