July 13th is Gastrointestinal Stromal Tumors Awareness Day! And that "13" has extra relevance. 5,000 Americans are diagnosed with Gastrointestinal Stromal Tumors (GIST) each year. That’s 13 people diagnosed each day.…
A recent genetic study of early settlers in Iceland is hoped to shed light on certain genetic diseases, as well as the history of the population. The original articles can…
A new treatment for schizophrenia has been approved by the US Food and Drug Administration (FDA). Aristada Initio (aripiprazole lauroxil) for the initiation of Aristada (aripiprazole lauroxil) is now expected…
Researchers have found that taking nutritional supplements may affect the progression of genetically caused hearing loss. The full article can be read here, at Michigan Health Lab. Background to the…
According to Queenstown Research Week, AWCBR, and QMB will be hosting a satellite event in August. The event will center on rare brain diseases, bringing together a group of dedicated…
According to a story from Check Orphan, a group of scientists from Stanford have begun the process of developing a new test that could help patients with rare Fanconi anemia…
According to a story from reuters.com, the U.S.-Israeli company BrainStorm Therapeutics will not provide its investigational stem cell treatment under the recently passed U.S. Right to Try law. The company…
The Australian government will give $33 million to researchers to study rare cancers and rare diseases. The original article can be read here, at the Department of Health’s website. Background…
Happy end-of-June, readers! A lot of people are getting ready for the fourth of July right now. However, as a lot of the rare community knows, not everyone is able…
June is Apert Syndrome Awareness Month! As summer sets in, let's take a moment to learn a little more about this rare disease and do our part to raise some…
According to a story from bioengineer.org, a group of scientists working at the Columbia University Irving Medical Center (CUIMC) have managed to develop a computational model that could potentially make highly…
Jim and Melea Martin are Outreach Partners with Future by Design, a family support group organized by the Cystinosis Research Network. Melea has cystinosis and Jim is her husband. We…
This article discusses the plot of the biographical film Brain on Fire. Susannah Cahalan was twenty-four when she began experiencing seizures, hallucinations, and, after only a few weeks, catatonia. Her…
Tomorrow is World Scleroderma Day! This date is an opportunity for anybody with an interest in scleroderma to join together as one united voice to shine a spotlight on a…
The National Society for Phenylketonuria (NSPKU) is holding their PKU Diet Challenge today. The diet challenge is specifically aimed at MPs (Members of Parliament in the UK-- aka, not me),…
According to a story from today.com, Dr. David Fajgenbaum was first diagnosed with Castleman disease in 2010. His first encounter with the illness was terrifying. He was confined to the…
Understanding diseases and the mechanisms behind them is a crucial step towards developing treatment. Many times, however, it's difficult to accomplish this due to the rarity of a condition, or…
I had the chance to chat with Amber Olsen, the founder of The United MSD Foundation, and mother to Willow. This is their story. Willow had been a seemingly healthy…
Visit any pediatric ward in a hospital or medical center and you will see many pieces of medical equipment, but visit the OT and PT departments and you are in…
According to a story from Fierce Pharma, the National Institute for Health Care and Excellence (NICE) has decided to reject the drug Crysvita for coverage on the National Health Service…
A pie to the face?! Yes, you heard right! Saturday, June 30th is Arthrogryposis Multiplex Congenita (AMC) awareness day! It is our duty here at Patient Worthy to shine a light…
“It’s a literal miracle every time I sing,” says Charity Tilleman-Dick. Charity is an opera singer that reaches the top of the charts. That’s miraculous enough for most us. Charity,…
According to a story from uk.news.yahoo.com, when Billy Caldwell, age 12, and his mother returned from traveling to Canada, the Home Office initially confiscated a substance that had been the…
According to a story from Human Rights Watch, stories of preventable fatalities due to medical emergencies in immigrant detention centers in the U.S. have begun to emerge. In many cases,…
According to a story from Angelman Syndrome news, Angelman syndrome was recently given its own disease unique disease code: Q93.51. The new code will help make researching and tracking the…
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