November 1st is Acromegaly Awareness Day! What is Acromegaly? Acromegaly is a hormonal disorder characterized by significant, abnormal growth, caused by an excess amount of growth hormone, or GH. GH is produced…
Goethe University in Frankfurt, Germany has been awarded a grant of more than one million euros as part of a large-scale project in Europe to standardise and make available clinical…
An on-going study of an investigational drug for primary biliary cholangitis has been given the go-ahead to continue by a safety monitoring board. The planned review recommended that the Phase…
Ellen Pompeo, who plays a doctor on Gray's Anatomy and was featured as a guest on Ellen Degeneres' The Ellen Show. We recently read an opinion piece on drjengunter.wordpress.com from OB/GYN,…
Any research that's done with rare disease patients in mind, working to improve their treatment and experience is wonderful. However, when collaboration between both researchers and organizations working to support…
The Cambridge Rare Disease Network’s RAREfest, a festival focusing on rare diseases, will bring together researchers, scientists, patients, and the public. It’s taking place on the 30th November and 1st December in…
CNS-PNET brain cancers are typically diagnosed by type according to their specific location in the brain as well as how they appear underneath a microscope. However, its recently become clear…
Growing up without a diagnosis is hard. In a world which frequents new scientific discoveries, you're still living as a medical mystery. When no one knows the answer, patients often…
Novartis has announced positive findings from their research into brolucizumab, an investigational drug being developed to treat neovascular age-related macular degeneration. This data comes from year two of the…
According to a story from Parkinson's News Today, a recent review of Parkinson's disease research found that there is not enough data that explains the link between mutations of several…
Results from a study that were presented at the European Society for Medical Oncology’s Congress have shown that the investigational drug for prostate cancer INO-5150 may be able to slow…
This is the second part of Amber's story. Check out part one here. June rolled around, and my appointment with the rheumatologist came up. The hour-long car ride there made…
According to a story from Markets Insider, the biotechnology company Innovate Biopharmaceuticals, Inc., recently announced encouraging proof-of-concept data for its lead medical product larazotide acetate. This experimental drug appears to…
According to a story from greeleytribune.com, a couple has been working to form a nonprofit to help spread awareness about an unusual rare disease called achalasia, which can cause the…
For esophageal cancer (like many rare conditions), early diagnosis means a better prognosis. Unfortunately, until now there haven't been many ways to determine whether or not an individual may be at…
November is Pancreatic Cancer Awareness Month. The American Cancer Society’s estimates for pancreatic cancer in the United States for 2018 are: About 55,440 people (29,200 men and 26,240 women) will…
A new study into a potential drug for cystic fibrosis has begun. The Phase Ib/IIa trial will investigate the drug POL6014 in up to forty patients who have cystic…
An innovative new treatment means practically nothing if we can't determine the type of patient it's going to be effective for. For an illness like acute myeloid leukemia (AML), which is…
A recent article titled ‘How I use molecular genetic tests to evaluate patients who have or may have myelodysplastic syndromes’ published in the journal Blood discusses the role of genetic testing for…
Hello all! My name is Amber Aerni. I am 28 years old, and I would like to tell you the story of my POTS journey. Yes, I refer to my…
According to a story from globenewswire.com, the drug developers Pfizer and Novartis have recently announced the beginning of a collaborative effort to test new potential therapies for nonalcoholic steatohepatitis (NASH).…
NSCLC Non-small cell lung cancer or NSCLC is the most common kind of lung cancer diagnosis. It affects over 2 million people and of those, there's a small group who…
An experimental therapy for melanoma patients has shown anti-tumour activity in an ongoing Phase 1 study. The therapy, called pegzilarginase (AEB1102) is being developed by Aeglea BioTherapeutics. For more…
According to a story from epidermolysisbullosanews.com, the biotechnology company TWi Biotechnology, Inc., recently announced that is has begun enrollment for its Phase 2 trial. This trial will test the company's…
Loxo Oncology has shared interim clinical data from an ongoing study of the drug LOXO-292. The study, a Phase 1/2 clinical trial, involves patients with RET-mutant medullary thyroid cancer, as…
© 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.
