When you have a rare disease, you know that the way it effects your life goes far beyond the symptoms listed on WebMd. It riddles through plans for weekend, your…
It's common knowledge that your Corona is doing your liver no favours. Heavy alcohol consumption isn’t great for your health. Reported in Cell Metabolism, new research gets more specific: the…
As originally reported in Biobuzz, the story of rare disease treatment took a turn in the age of modern technology. Rare diseases have traditionally been inaccessible to the naked eye,…
Genes themselves are a relatively new discovery, found only about a century ago. Gene therapy, a medical procedure that alters genes to address disease, is a concept a few decades…
As originally reported in the Washington Post: many parents of children with rare diseases are familiar with the agony of mystery surrounding their children’s medical conditions. The frustration of searching…
One particular problem for those with rare diseases is that the manifestation of the disease is often particular to the patient, each with their own quirks and tendencies. This makes…
In western culture, many people tend to frame body and mind as two distinct parts of us. There are mental health disorders, then there are physical ailments. To treat disease,…
Stem cell therapy is one of those new health trends that, in many cases, make doctors and scientists cringe. The lack of evidence and research makes critics call it not…
As originally reported in Scimex from a press release by The MITO Foundation, the main five patient advocacy groups on mitochondrial diseases have pledged to work together to afford 1…
Genes themselves are a relatively new discovery, found only about a century ago. Gene therapy, a medical procedure that alters genes to address disease, is in its first 30 years.…
As reported in 17 Magazine, at 17, Billie Eilish has rapidly become a huge celebrity with her life catapulted into the public eye. Part of being famous in 2019 means…
Of all possible symptoms, four year old Alex Vasey developed one that most people don't associate with disease. As originally reported in The Daily Record, Alex’s rare genetic condition, Williams…
In the US, medical costs come in the form of drug prescriptions, doctors visits, expensive surgeries, and visits to specialists. As originally reported in The Tyee, in Canada, patients are…
Rare diseases often lack a voice. Unlike more common diseases, they do not have big movements that bring the disease awareness through fundraisers, 5Ks, and spokespeople. However, sometimes, celebrities have…
It’s lonely when your child has an ultra-rare disease. There's not sufficient funding; there may not be a movement to rally behind, no community to share stories and struggles with.…
When people think of the effects of climate change, it is usually about how it affects our external world, causing storms, floods, heat, and rapidly changing and more severe climates.…
Wearable monitoring technology that tracks a persons movement, heartbeat, and bodily functions has become popular across society because it gives us a window into our bodies and to watch the…
As reported in Forbes Magazine, Researchers at the University of Pennsylvania are exploring a new tool for encouraging patients to comply with health care recommendations for colonoscopies, an invasive procedure…
As reported in Cystic Fibrosis News Today, a new drug combination created for Cystic Fibrosis, a mix of Vertex's elexacaftor, tezacaftor, and Kalydeco has been granted priority review. The new…
Originally reported in People Magazine, a family struggled for years to figure out what was happening to their son, Cohen Bramlee, who for years received his nutrients from a central…
Scientists have discovered an immune suppressing cell to combat symptoms of multiple sclerosis. In a new study on mice, researchers have discovered a cell that can possibly be used to…
As covered in Stat and True Viral News, ALS made a name for itself in 2014 when their donations campaign, the ice bucket challenge, went viral, earning $115 million dollars…
In a story reported in the Boston Globe, Stephen Marcus, as a person with Crohn’s disease, knows the laws surrounding bathroom policies from public franchises. He worked as a lawyer…
.jpg){kind=icon}
Trust is vital when it comes to medical care. People put their most important questions and qualms into the hands of doctors and medical staff and expect that they can…
As reported in EurekAlert, an exciting new treatment method has entered the conversation to treat inflammatory bowel disease (IBD). Researchers have successfuly used mice population to show that precision cutting…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
