Gideon hides it well with his infectious smile, but for over two years, he fought bravely for his life. It started when he was a mere 6-year-old toddler. Gideon had…
Pharmaceutical company, Pfizer Inc., announced recently that the U.S. FDA approved the first (and only) Janus kinase inhibitor for treating severe psoriatic arthritis (PsA). Called XELJANZ® and XELJANZ® XR, this…
….Now what? A master’s degree in teaching? Would that even make sense for my life if I couldn’t even work an eight hour day and was currently seeking employment for…
Originally reported by Fox 17 Nashville, many Tennessee residents stress that a new tax reform bill will eliminate continued drug advancement and development for many rare diseases. The House and…
According to a December 9th press release from Janssen Biotech, Inc, the results of a pooled analysis of patients with mantle cell lymphoma illustrated that those treated with Imbruvica (ibrutinib) had…
Neuropsychiatric disorders can be some of the most challenging conditions to understand. Mechanically, socially, and biologically, it is often difficult to make sense of their innermost workings. Recent research, however,…
Kei Otake is a 19-year-old cello student at The Juilliard School - a prestigious performing arts college in New York City that boasts alumni like Viola Davis, Robin Williams, Adam Driver…
A five-year-old boy who spent the majority of his life battling neuroblastoma can now rest in peace. Jacob Jones passed away at a hospice with his mother and father sitting…
The Washington Post published a bizarre story earlier this month that is equal parts interesting and terrifying! A US National Security Agency counterintelligence officer (AKA a spy) is claiming that while…
Why are US children with cystic fibrosis improving faster than Canadian kids? Newborn screenings and child healthcare programs may be behind the improvement among US children with cystic fibrosis. There's…
A new study may lead to new cures and treatments for Marfan syndrome. Researchers at Johns Hopkins have made great progress testing in mice. Follow the original story here. On…
Gene therapy has been on the horizon for years now, but before today, it was only a reality for patients with non-inherited diseases caused by genetic mutations. That just changed!…
5-year-old Gia Danninger was diagnosed with aplastic anemia last year. Ever since, it's been a constant battle for her life, but Gia fights with courage. This rare blood disorder causes…
After dueling with a fatal rare disease, Makenna Vanzant, will be making her epic return to the basketball court. The high school sophomore has been battling hemolytic uremic syndrome and…
What do Nathaniel, a child with Bardet-Biedl Syndrome and Sylvester Stallone's famous boxing hero have in common? Keep reading below, or follow the original story to find out! Braille reading…
On this season of America's Got Talent, the world met Christian Guardino. I was one of millions who heard his beautiful singing voice as he belted out his song onstage.…
Patients diagnosed with Duchenne muscular dystrophy (DMD) have always lived with a grim prognosis. Many don't make it into their 20s and face debilitating symptoms years earlier-- a dark reminder…
Jay and Amy Granzow are among the many worried parents fearing the GOP tax plan, because of the threat it brings to orphan drug research. The Manhattan Beach couple fear…
Robbie Edwards has a rare disease, one so rare that she's one of only 17 people in the world with it. She suffers from hereditary spastic paraplegia which represents a…
As a scientist, Mary-Claire King has had a remarkable career related to her study of BRCA genes. She’s received a Lasker Award and has been recognized by President Obama with…
Not all bacteria are created equal, but all play a role in sustaining--or breaking down--health. And when you're talking about children with cystic fibrosis (CF), a lung disease that impairs…
Happy Holidays, Patient Worthians! As we celebrate the holidays this year, we take a moment to reflect on the things that matter most deeply to us. This week, we have…
In the UK, Newcastle University and Pfizer are collaborating on a $39.9 million-dollar funded project aimed at developing greater tools for testing patients at the most risk for non-alcoholic fatty…
Although Parkinson's disease (PD) affects men and women equally, researchers have discovered an area of disparity: care giving. A study published this month in Neurology by researchers at the Perelman School of Medicine…
There's a great need for more depictions of rare conditions in the media, and the film "Wonder" has put rare disease in the spotlight-- especially craniofacial conditions like Crouzon syndrome.…
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