It was a Christmas miracle for the Garcia family as their infant quickly recovered and was discharged from the hospital to enjoy the holiday at home, reported DailyMail. 1-year-old baby…
Latest research from a University of Chicago team found that dynamic contrast-enhanced MRIs (DCE-MRIs) were much better in early detection of breast cancer than annual mammograms for patients with high-risk…
High school student, Molly Alter, fell limp while braiding her best friend, Jackie Acierno’s hair, and it was the heroic actions of Jackie to perform CPR that saved her life,…
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…
Happy holidays to the Vallecalle family, who are rejoicing in the fact their baby girl is cured of the rare disease, hyperinsulinism. Not only that, but they finally get to…
An amazing 6-year-old boy from Bradford, who was diagnosed with a rare heart condition called LEOPARD Syndrome, creatively started a fund raising campaign revolved around Christmas and singing to raise…
Earlier this month, researchers at the University of Montreal found an encouraging way to improve treatments to cystic fibrosis patients. They discovered key molecules, known as quorum-sensing inhibitors, could be…
According to The Washington Post, on Tuesday the Food and Drug Administration, FDA, made history by approving a gene therapy for childhood blindness, which will change the lives of many…
Jay and Kathy Keller of Franklin, Idaho are getting creative this year with their donation efforts, reports WENY News. The Kellers are asking for people to write Christmas letters to…
Irish drugmaker, Shire, announced earlier this month it will bring new genetic disorder drugs to India, stepping up its worldwide presence. Shire is unique in that it's one of the…
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…
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…
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…
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!…
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…
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…
All the odds were stacked against Jimmy Roberson, a man in Birmingham, Alabama. It all began in 2013. Jimmy was on a trip to the lake, but the relaxing day…
You may have seen Sanele Junior Xaba in an ad for Adidas Original, posing in mythical depictions for European artists, or photographed nude, covered by only butterflies in the magazine Label.…
Global Genes is one of the world's most prominent rare disease advocacy groups and early next year, they will host the second annual RARE in the SQUARE event. At this…
Six weeks after their daughter was born, a young New Zealand couple had their two children taken away by the state (one was a newborn baby) because of what state…
Being a teenager is inherently difficult. There's no real way to make it to your twenties without feeling tired, cranky, and misunderstood by everyone around you. It's even harder when…
A much-lauded piece of wisdom in engineering is that “failures teach more than successes.” While this might seem to contradict itself, I ask you to think back to your own…
The close knit Algiers community in New Orleans united together once again for a charity walk to raise awareness and money for Stevens-Johnson Syndrome (SJS). SJS is a highly rare…
Welcome Back Patient Worthians! This week, we have stories of brave patients and caregivers who run, march, and make innovative steps to reach recovery. A young girl marches after her…
Our gut bacteria may be responsible for antiphospholipid syndrome (APS). What do you need to know about the ordinary gut bacteria known as commensals, and APS? Keep reading, or view…
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