Researchers recently linked Cushing syndrome remission to the development of de novo (first occurrence) diseases, including autoimmune diseases, in various patients. But how did they reach this point? The first…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
April is Sarcoidosis Awareness Month. During this month, people with sarcoidosis, caregivers, physicians, and other supporters come together to amplify the stories of those affected, reinforce the importance of continued…
According to a story from Healio, the rare disease sarcoidosis can affect a number of areas and systems in the body, such as the eyes, skin, lymph nodes, and lungs.…
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…
An estimated 15% of people with sarcoidosis, a rare condition which causes granulomas to form throughout the body, develop neurosarcoidosis. This form, which is characterized by central nervous system (CNS)…
If current estimates are correct, around 10% of people with sarcoidosis within the United States are using off-label TNF-alpha inhibitors such as Remicade (infliximab). But according to an article in…
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…
Have you heard of the pulmonary microbiota, which may also be referred to as the lung microbiome? This refers to the complex collection of microorganisms (bacteria, viruses, bacteriophages, fungi) that…
Over 30 million people in the European Union (EU) are living with a rare disease. Yet rare disease drug development is still somewhat stifled. Orphan designation helps to incentivize drug…
Getting a rare disease diagnosis can be difficult and take a long time. This can be a problem, as time is something that those with progressive illnesses don't have much…
Clinical trials can be helpful tools in determining the safety, efficacy, tolerability, recommended dose, and pharmacokinetics of specific drugs (among other things). In doing so, these trials help tell researchers…
In an August 3rd news release, biopharmaceutical company RELIEF THERAPEUTICS Holding AG ("Relief") shared that its therapy RLF-100 (aviptadil) for sarcoidosis received Orphan Drug designation from the FDA. This…
The month of April is recognized as Sarcoidosis Awareness Month, a time for spreading awareness about sarcoidosis among the general public and the medical community. The Foundation for Sarcoidosis (FSR)…
If you've ever looked into the field of medical research, you may have heard the term biomarker. In short, a biomarker is a type of measurable sign or indicator which suggests…
A study published in BMC Pulmonary Medicine focuses on the role of endothelial progenitor cells and fibrocytes in lung sarcoidosis. They specifically investigated how these cells, along with CD34 + cells, spurred…
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 United States is coping with an obesity epidemic. It is therefore critical to understand the distribution of body fat and its effect on treatment. A recent article in Healio…
According to a story from eminetra.com, 37 year old sarcoidosis patient Sonja Nixon Frazier sprung into action when she was working at Taco Bell. She along with two workers knew…
According to a story from Sarcoidosis News, while the global challenge of the COVID-19 pandemic has been an obstacle for advancement in many rare diseases with trials and research grinding…
April is designated as Sarcoidosis Awareness Month. This year's event will be the sixth annual awareness campaign, which will involve collaboration between the Foundation for Sarcoidosis Research and the American…
According to a story from pharmaphorum.com, Jim Kuhn had a successful career in business for over 30 years, but everything changed a decade ago when he was first diagnosed with…
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An article by Dr. Syavra Tipirneni, dermatologist, recently appeared in BioSpectrum News. Dr. Tipirneni points out that we often succumb to our desire for perfect skin without the realization…
The 2019 Toronto Patient Education Conference Are you a sarcoidosis patient? Well don’t miss this important patient event. At this conference, sarcoidosis patients and their families will have the opportunity…
The 2019 Boston Patient Education Conference Are you a sarcoidosis patient? Well don’t miss this important patient event. At this conference, sarcoidosis patients and their families will have the opportunity…
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