According to a story from rte.ie, a team of scientists from the Trinity College Dublin have managed to discover a new technique that allowed them to shut down inflammatory response…
Happy Friday, everybody! This week we have a story about a woman with Dysautonomia and a wide range of interests, a mother who finds strength in a moment of grief,…
Today is Bohring-Opitz Syndrome (BOS) Awareness Day! You'd be forgiven if you haven't heard of this rare disease, which is why awareness days exist! Bohring-Opitz Syndrome is an extremely rare condition…
According to a study published in the journal Nature Communications, a very common form of ovarian cancer may actually find its beginnings in the fallopian tubes, the tube that eggs…
According to a story from the Sunderland Echo, a man from the Sunderland area, Graydon Downs, was diagnosed with glioblastoma when he was just 33 years old. At that time,…
If you have a close relative with Myasthenia Gravis (MG), you run a greater risk than the average population of being diagnosed with it. Additionally, you have a greater risk…
The United States Food and drug Administration recently announced its decision to grant a priority review. The privilege of expedited process, according to a press release, falls to AstraZeneca and…
According to a story from Chronicle Live, a medical team from Newcastle in the UK will travel to the Kerala province in southern India to treat patients with hemophilia. The…
Sunday, April 8th is Cushing Awareness Day! Cushing syndrome (also known as hypercortisolism, not be confused with its sub-form Cushing disease) is an endocrine disorder characterized by excessive cortisol levels…
Khadeeja Munchi - Kay for short! - of South Africa may only be 21 years old, but her spirit and tenacity would confuse anyone into thinking she's decades older. "Life…
A story published on ESPN.com, and written by Jackie MacMullan, details NBA Hall of Fame inductee Nate "Tiny" Archibald's diagnosis of the rare disease amyloidosis. Amyloidosis occurs when a substance called amyloid builds…
Grab your sneakers because the 2018 Liver Life Walk is on the way, hosted by The American Liver Foundation. Thousands of people will walk to advance liver health and wellness, one…
As most people with invisible illnesses know, it's hard to explain certain behaviors to people when you don't "look sick." There's an endless list of symptoms that need to be…
Rare in Common, a new monthly podcast which features stories about patients with rare diseases, made its debut on Rare Disease Day, February 28th. The podcast's goal is to raise awareness and…
A story from Charcot-Marie-Tooth News highlights the necessity for genetic testing and a physical examination prior to chemotherapy in order to prevent nerve damage in people with asymptomatic Charcot-Marie-Tooth disease…
In an twist of fate, a brand new gene therapy for the treatment of Adrenoleukodystrophy (ALD) uses one of medicine's greatest nemesis, HIV, to treat this fatal genetic brain disease-- and…
According to a story from SMA News Today, a recent study has demonstrated that the parents of children with spinal muscular atrophy are often skeptical about enrolling their kids in…
Discussion on Right to Try legislation continues, and the federal government could soon change existing rules. Many people wonder whether or not patients should have the right to try potentially…
While learning about cancer at a molecular level while being a medical student, Omar Salman from Virginia Tech Carillon School of Medicine learned much more firsthand when he was diagnosed…
According to a story from asianscientist.com, a group of Japanese researchers have managed to unearth a genetic mutation that is associated with progressive supranuclear palsy. The discovery is helping scientists…
The EveryLife Foundation for Rare Diseases hosted a panel discussion on Right to Try Proposals, as part of their 2018 Legislative Program for Rare Disease Week on Capitol Hill. What…
According to a story from triblive.com, Roger Ziegler has self-published a book about his family's experience with his son Noah. Noah is now a healthy 24-year-old, but there were multiple…
According to a story from the Lancashire Telegraph, Dr. John Timms, age 48, was recently diagnosed with a rare and deadly form of cancer: mesothelioma. Dr. Timms had committed much…
A gene therapy for Pompe disease is the first treatment of its kind to be clinically tested, reports Duke University. Researchers at the University, working with NCATS Therapeutics for Rare…
One of the greatest gifts of being a kid is imagination. When you're a kid, anything is possible and even the hardest times can turn into something so much better…
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