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…
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…
A retrospective medical records study for interstitial lung disease (ILD) has just been published in Arthritis Care & Research. The results found that for women diagnosed with ILD as well as an…
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…
According to Healio, recently published data suggests that the incidence of scleritis lowered by around 34% over a 22-year period within the United Kingdom. Scleritis, which occurs when the sclera…
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…
Pam Kelley, a reporter whose focus is on the challenges facing people below the poverty level, submitted this story to the Charlotte Magazine. Pam conducted interviews with Cheryl Potts over…
For generations, economists, pundits, and holders of public office have told the poor that pulling themselves out of poverty was just a matter of acquiring the right skills, making the…
.jpg)
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…
According to a story from BioSpace, the biopharmaceutical company Altavant Sciences has recently announced that the first patient has been dosed in a phase 2a proof of concept trial. This…
According to a story from Healio, a recent study found that sarcoidosis patients that were diagnosed with the disease when they were older tended to have more severe disease and…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
