Those who are at high risk for pancreatic cancer now have a new screening option thanks to a novel program developed by Hackensack University Medical Center. The Center has launched…
Tourette Syndrome affects one million Americans. 2022 is the Tourette Association of America's 50th Anniversary, and to celebrate, you can get involved in Tourette Syndrome Awareness Month from May 15th…
Mereo BioPharma Group has just announced positive results from their Phase 2 study called ASTRAEUS. This study investigated alvelestat (MPH-966), which is an oral neutrophil elastase inhibitor, as a treatment…
When Sophia Scott was growing up, her parents noticed that she was displaying a variety of different potentially concerning traits. They began undergoing some tests. Eventually, just one day before…
Gannex has just announced that they have dosed the first patient in their Phase 2 clinical trial examining ASC42 as a treatment for those diagnosed with primary biliary cholangitis (PBC).…
The Retina World Congress, a premier congress to discuss issues in retinal health, recently took place from May 12-15, 2022. During the Congress, various speakers and stakeholders discussed advances…
Many in the medical profession believed that the road to rapid recovery in myalgic encephalomyelitis was through exercise. Eighty-two-year-old Veronica Jones of Gloucestershire, UK believes that the advice given…
What happens when you treat your condition, but the medication isn’t effective? Sometimes, other approved medications are beneficial for patient use, but other times, there are no approved medications.…
According to a recent article, the parents of Anyiah Johnson are working to raise awareness for their daughter’s rare diagnosis of autoimmune encephalitis. Autoimmune Encephalitis Autoimmune encephalitis (AE) is a…
HAE Junior, an advocacy group from the Czech Republic and a Patient Worthy partner organization, is issuing a renewed call for submissions for its Stronger Than HAE art exhibition. This…
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…
According to a story from BBC, 28 year old Saskia James has struggled with myalgic encephalomyelitis (also called chronic fatigue syndrome) for years, which began with the onset of seizures…
Continued From Part One He cannot participate in the sports and physically demanding hobbies he once enjoyed. “Due to pool & gym closures during the Covid pandemic, walking was my…
For the first three years of Brody Koslowski's life, he seemed - on the surface - to be a healthy, happy boy. So his parents, Matt and Molly, were…
In Europe, Orphan Drug designation is granted to therapies intended to treat, prevent, or diagnose a rare, life-threatening, or debilitating disease. For the purpose of this status, rare conditions…
According to a story from the Children's Tumor Foundation (CTF), the month of May is recognized as Neurofibromatosis (NF) Awareness Month. This is a time for spreading awareness about neurofibromatosis…
I’ve known people to almost faint at the mention of words like “cancer,” “heart disease,” or “dementia,” imagining the uncertainty of one’s fate when confronted with these awful diseases.…
According to a story from Globe Newswire, The European Medicines Agency's Committee for Medicinal Products for Human Use (CHMP) has recently announced a positive opinion in regards to the experimental…
The journey to a rare disease diagnosis can be long and daunting - and, in some cases, may mean facing a few misdiagnoses first. According to KTVB7, this is what…
The new FDA-approved oral formulation of Radicava ORS (edaravone) is more convenient than the intravenous formulation, yet the efficacy and composition remain the same. The oral formulation may also be…
Sophie had a wish, and this month her mother is going to parliament to fulfill that wish. Sophie’s death has brought about the first House of Commons debate on childhood…
When they found out that they were having a son, Nash and Callie Horne were thrilled. They even decided to name their son Nash as well. But then an unexpected…
Hesperos Inc. is a small company based out of Orlando. But, with funding from the NIH NCATS center, they have made exceptional and innovative progress on a novel invention for…
SOTIO Biotech has just announced that the first patient has received the first dose of treatment in their Phase 1/2 trial for SOT102. SOT102 is an investigative treatment for pancreatic…
According to a recent article, 82-year-old Veronica Jones is working to break the laziness stigma that surrounds a myalgic encephalomyelitis diagnosis. Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) Myalgic encephalomyelitis (ME),…
© Copyright 2024 Patient Worthy
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.
