It's time to raise awareness for and celebrate the patient population that lives with eosinophilic disorders. From May 15th until the 21st, the American Partnership for Eosinophilic Disorders (APFED) is…
The New Era for Preventing End-Stage Kidney Disease Act (H.R. 7506) is a new Act sponsored by Reps Gus Bilirakis and G.K. Butterfield. This Act would transform care for those…
Acknowledgment: This story is sponsored by Neurocrine Biosciences and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted,…
[Cancer Management and Research](cancer-management-and-research-journal) » [Volume 14](cancer-management-and-research-archive55-v1655) Feasibility and Safety of Anlotinib Monotherapy for Patients with Previously Treated Advanced Esophageal Squamous Cell Carcinoma: A Real-World Exploratory Study Authors [Zhang S](author_profile.php?id=1654738)…
According to a story from ALS News Today, around 5,000 people get diagnosed with amyotrophic lateral sclerosis (ALS) annually. In addition, costs of treatment for patients average $250,000 out of…
According to Fox News, the Connecticut Department of Public Health recently shared that there was at least one diagnosed case of Powassan virus within the state. Typically, it is rare…
The diagnosis of rare diseases can be difficult; they may share symptoms with other disorders, many are not well known, and many don't have specific diagnostic processes. Ankylosing spondylitis acts…
From 2010-2013, Abi Phillips embraced the role of Liberty Savage on Hollyoaks, a British fictionalized TV series about the lives of teenagers and their families. The program has since been…
Fibrodysplasia ossificans progressiva (FOP) brings a serious meaning to a commonly-used phrase: ‘My big toe.’ According to a recent article in the Orphanet Journal of Rare Diseases, FOP is an…
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…
It is believed that in 1916 a German doctor named Brachmann first identified a patient with symptoms of a disease later known as Cornelia de Lange syndrome. Then in…
A recent article emphasized the importance of recognizing symptoms that may mean you have meningitis, including headaches. Meningitis Meningitis is an inflammation of the fluid and membranes (meninges) surrounding your…
Galecto has announced they have completed enrollment in their Phase2b trial which will investigate GB0139 as a treatment for idiopathic pulmonary fibrosis (IPF). This trial is called GALACTIC-1. Galecto anticipates…
A recent article in Labroots stated that the majority of patients who have preleukemic disorders may not be candidates for leukemia. Estimates are that there are about ten to fifteen…
On the first Sunday in May, Cincinnati, OH hosts the Flying Pig Marathon – its 26.2 mile race. This year marked the 24th annual event. But for 17-year-old Diego Ramirez,…
Clinical trials are an important tool within the healthcare realm. These trials assist in developing deeper understandings of diseases, assessing and discovering treatment options, and learning new ways of identification…
Aeterna Zentaris’s ongoing DETECT trial is evaluating the drug macimorelin (tradename Macrilen™) for childhood-onset growth hormone deficiency (CGHD). As recently announced in an article published by GlobeNewsWire, the study (AEZS-130-PO2),…
Recently, an international group of pediatric rheumatologists and nephrologists met and created a consensus on a standard for a steroid-dosing regimen to treat childhood-onset systemic lupus erythematosus with proliferative lupus…
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Continued From Part Two We were told about what…
The Food and Drug Administration (FDA) has four distinct approaches to expedite the availability of therapies for rare, severe, or life-threatening illnesses: Priority Review, Breakthrough Therapy, Fast Track, and Accelerated…
The month of May is recognized as National Myositis Awareness Month, a time to spread awareness about myositis among the general public and the medical field. Organized by The Myositis…
After over 30 years of not knowing another family dealing with the same rare condition that our daughter Kelley had, we finally started to connect with others, thanks to the availability of…
For the last 52 years, individuals with Wilson disease have been relying, largely, on the same treatment options. These options, designed to remove copper from the body, include Cuprimine (penicillamine).…
In Europe, Orphan Drug designation is granted to drugs or biologics intended to treat, diagnose, or prevent rare, life-threatening, or chronically debilitating conditions. For the European Union (EU), a “rare”…
Imagine the highs and lows that accompany the doctor’s announcement that your sweet, innocent two-year-old daughter has leukemia. The good news is that your daughter has the type of leukemia…
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