During the past fifteen years there has been ever-increasing interest in scientific research in the role of microbiome in human health. According to a recent article in Forbes India, this…
A two-part series of “The Gene”, a PBS documentary, will air on April 14, 2020. The film, by Ken Burns, is based on a book with the same title written…
If you're worried or anxious because of COVID-19, you're not alone. If wondering about the intersection of rare diseases and COVID-19 only increases that anxiety, well, we're with you…
According to a story from Wexford People, 8-year-old Mia-Lily Ruttle wants to spread some hope to people around the globe. The girl, who has neurofibromatosis, was upset by the impact…
Judy had been living an active lifestyle after she retired as a library assistant for Portland Public Schools for 30 years. She kept up with her lifelong love, ice skating,…
Crohn's disease is a very rare condition in Taiwan, as only .2 of every 100,000 people are diagnosed with it. Because of this rarity, there is little to no awareness…
According to a story from globenewswire.com, the biopharmaceutical company Liquidia Technologies, Inc. just announced that the company's New Drug Application (NDA) has been officially accepted by the US Food and…
According to a recent article in Parkinson’s News Today, the drug prasinezumab has entered the second half of a Phase 2 trial. An earlier trial, NCT02157714, showed that the therapy…
As originally reported in Biospace, Cushing disease, a disease due to excessive cortisol, has recently had its first ever treatment option approved by the FDA for adult patients who are…
According to a story from Biospace, in Palo Alto, AI company Emedgene plans to dive into helping the undiagnosed with their new rare disease initiative. The company will be paired…
If you have read the news at all lately, you know that ventilators are a sought-after piece of medical equipment. With hospitals looking to treat mass amounts of patients…
Shannon and Todd Palmatier have three children, two of which have progressive familial intrahepatic cholestasis (PFIC). Their sons' diagnoses have brought the lack of knowledge and advocacy to the attention…
Social Distancing Social distancing has been coined as the most surefire way to stop the spread of COVID-19 across the American populace. What is this phrase used to refer to?…
No one was given a prep course on how to handle quarantine, especially not with kids. Here are some suggestions to help you get through these unique times, while making…
As Patient Worthy readers, we hope you and your families are doing well during this challenging time. The health and safety of our rare community is always at the…
Results of one of the largest and most important studies in a decade, the International Study of Comparative Health Effectiveness with Medical and Invasive Approaches (ISCHEMIA), were just announced.…
While many patients are grateful for their doctors and treatments, how many know why they are so passionate about what they do? In an interview with Dr. Patrick Flume,…
Hi everyone, Another week of life in COVID-19 era has passed! Today we have an article on a potential Coronavirus safety update. Next, we have the release of a new…
Researchers at Columbia University have discovered a new gene, TBK1, that is linked to the progression of amyotrophic lateral sclerosis (ALS). A lack of understanding of a rare disease hinders…
Michael and Armené Kapamajian were at home in Los Angeles settling in with their one week old baby, Sasoun, when their doctor called and asked them to come in…
According to a release on Public News Service, the state of West Virginia just implemented a new bipartisan law to support individuals with rare diseases and their families, a particular…
According to a story from BioSpace, Acceleron Pharma Inc. and Bristol Myers Squibb have announced recently that the US Food and Drug Administration (FDA) has recently approved a new drug…
April 17th, 2020 is World Hemophilia Day. This event is held to help foster awareness about hemophilia and other related bleeding disorders. It is a day when this rare community…
April 22nd, 2020 heralds the beginning of World Primary Immunodeficiency (PI) Week. This will be the ten year anniversary of the event, which is designed to spread awareness about PI…
April 15th, 2020 will be the 7th annual International Pompe Day, a day of recognition and fostering awareness around Pompe disease organized by the International Pompe Association. Like many rare…
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