Bridging the Voice of ALS Patients | ATSDR Bridging the Voice of ALS Patients Because learning more about ALS is an important step in the battle to defeat it, the…
Promising new drug target for autoimmune and allergic diseases revealed Credit: The Babraham Institute A study led by researchers at the Babraham Institute in collaboration with the Wellcome Sanger Institute…
Imagine that you're a parent of five beautiful daughters. One night, you put them all to bed and all seemed well: playful, happy, excitable. Then, the next morning, you wake…
Blood clots and fever and coughing: oh my! As COVID-19 spreads throughout the globe, researchers are discovering more and more symptoms associated with this novel coronavirus. But what happens after recovery? Well,…
In 2003, a respiratory illness called Severe Acute Respiratory Syndrome (SARS) swept the globe. The condition, caused by a coronavirus, spread throughout two dozen countries, infecting 8,098 people and killing…
Many patients with rare diseases require some sort of treatment or therapy to manage their conditions. In the case of atypical hemolytic-uremic syndrome, or aHUS, this therapy is dialysis. Learn…
By Natalie Homan from In The Cloud Copy The COVID-19 pandemic has changed the lives of millions around the world in an incredibly short span of time. It’s hard to…
By Natalie Homan from In The Cloud Copy Two businesses that advocate for patients with rare and orphan diseases announced recently that they are teaming up to help patients get…
According to Hemophilia News Today, data collected from a Phase 2b trial highlights that the subcutaneously administered DalcA is effective for the treatment of hemophilia B. Find the full press…
This was originally published as the Seventh Newsletter for the Leukodystrophy Resource Research Organisation (LRRO) on April 19th 2020. You can read more from their newsletter here. To state the blatantly…
Click here to read part 1 and here to read part 2 After coming back from the Global Genes conference, Kristie was convinced that establishing a foundation was the right…
May is recognized as Behçet's Disease Awareness Month and May 20th is recognized as Behçet's Disease Awareness Day. The focus of these events is to help spread awareness about this…
When studying biomarkers of lupus nephritis, researchers at the University of Houston discovered something interesting: race-based differences. Biomarkers are some sort of measurable substance; in this case, urinary proteins. However,…
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.
