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…
Happy start-of-summer everyone! We're kicking off the summer with a wrap up on rare disease news this week. We have an article about a systemic mastocytosis study, and a clinical…
According to a story from apnews.com, Mike Coble, a senior at Byron High School in southeastern Minnesota, was recently diagnosed with Guillain-Barre syndrome. Mike is on three different sports teams…
According to Pulmonary Fibrosis News, a study with mice showed that a certain compound found in plants, parthenolide, is associated with a sizable reduction in lung fibrosis and the subsequent inflammatory…
According to a story from UK Healthcare, a team of researchers and scientists at UK Healthcare is preparing to start a clinical trial that will test a new therapy aimed…
According to a story from the Ottawa Sun, several hundred people participated in the annual ALS Walk on June 9th, in which people walk down the Sir John A. MacDonald…
Patient Worthy's partner The MDS Foundation will be hosting a patient forum and and their first ever awareness walk in July! The 5k will be held July 20th and the…
Saturday June 23rd is Dravet syndrome awareness day! Dravet syndrome is a rare genetic dysfunction of the brain (epileptic encephalopathy). It begins in the first year of life in an otherwise…
Today is World Sickle Cell Day! Established in 2008, this international awareness day is aimed to increase public awareness and an understanding of sickle cell diseases, while educating those who may…
The All of Us program is a huge research project set up by the National Institute of Health (NIH) that aims to collect genetic and health data from a representative…
In today's ever-changing - and downright weird - world, you'd be correct to say say (if not over-say) that technology is slowly killing us. But not in this case! Good…
June 17th is worldwide CDKL5 Awareness Day! It's our mission to give a spotlight to the rare diseases that don't often get talked about - and especially on its awareness day!…
Happy Father's Day weekend! While Father's Day can be complicated in a rare family, rare parents deserve a round of applause. This week we have a Father's Day tribute from…
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