Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
From September 7-9, 2023, the Rare Fair was held in Research Triangle Park, North Carolina, and was also available for attendance online. This event began in 2018 and has been spearheaded by The Dash…
From September 7-9, 2023, the Rare Fair was held in Research Triangle Park, North Carolina, and was also available for attendance online. This event began in 2018 and has been…
Loriana has been through more than most. But she hasn’t done it alone. Like so many who have had cancer, Loriana’s battle is a long and complex one. Though she…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
September is recognized as Blood Cancer Awareness Month, a time of year to help spread awareness about blood malignancies among the general public and the medical community. In order to…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
The International Pemphigus and Pemphigoid Foundation is holding its 2023 Patient Education Conference from October 27-29, 2023. Since 2020, this conference has been held virtually online, and this format will…
According to a story from Pharma Times, the biopharma company EsoCap has recently announced that it has finished enrollment for its phase 2 clinical trial. The trial includes patients from…
According to a story from The People's Pharmacy, a Senate report from 2018 highlights how opioid manufacturers regularly donate large sums of money to professional organizations and patient advocacy groups.…
This year, September 17-23 is being recognized as Balance Awareness Week. Organized by the Vestibular Disorders Association, a Patient Worthy partner organization, the goal of this campaign is to help…
The month of September is recognized as National Sickle Cell Awareness Month in the US. This is a time to spread awareness about sickle cell disease among the general public…
According to a story from PR Newswire, the pharma company Medivir AB, which is focused on developing cancer therapies in areas of critical high unmet need, recently announced the release…
According to a study published on March 22, 2023 in the scientific journal Frontiers in Endocrinology, the rare genetic disorder X-linked hypophosphatemia (XLH) has a negative impact on the function of…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
According to a story from Cure Today, Geoff Grubbs had accepted chronic lymphocytic leukemia (CLL) as a part of his daily life, with no expectations of a cure. But after…
According to a story from Healio, a recent study doesn't bode well for people living with hidradenitis suppurativa (HS), a serious and debilitating skin disease. The data found that comorbidities…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
According to a story from Axios, the relatives of Henrietta Lacks are filing a second lawsuit against a biopharmaceutical company, alleging that the company is unfairly profiting through the use…
According to a story from Medpage Today, a study conducted by scientists at the University of Texas MD Anderson Cancer Center highlighted the substantial benefits of aerobic exercise in people…
According to a story from Inside Precision Medicine, Moderna recently announced a partnership with CARsgen, a Chinese biotechnology company, in order to collaborate on the development of a combined mRNA…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
The Cholangiocarcinoma Foundation has recently released a white paper titled “Cross-over arms in oncology clinical trials: An important consideration for patients.” This paper highlights a non-traditional clinical trial approach that…
According to a story from Reuters Events, hemophilia treatment has seen significant advancements in recent years. However, female patients continue to face difficulties that often lead to disparities in quality…
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