According to a story from MarketWatch, Annie Wilson was diagnosed with spinal muscular atrophy when she was only six months old. With no real treatment options available, doctors told her…
Cystic fibrosis patients in the UK are planning a protest on November 19th, 2018 with the goal of getting Orkambi, an important cystic fibrosis drug, covered on the NHS. This…
According to a story from the Australian Jewish News, a Jewish teen named Gidon Goodman was born with Gaucher disease. Recently, he started the first Gaucher disease patient support group…
According to a story from nature.com, Amber Sapp's twelve year old son Garrett had been participating in a clinical trial that was testing a new potential treatment for his Duchenne…
According to a story from NRI Pulse, Kiran and Anju have been forced to watch over the past year as their daughter Aadya's physical and mental condition declined. After serious…
According to a story from statnews.com, Ella Balasa, who has cystic fibrosis, has been seeking to join a clinical trial in hopes of finding a new treatment that can help…
According to a story from the Ottawa Citizen, Dianne Sauvé, who is 60 years old, learned six years ago that she has the rare condition acromegaly. Since she learned that…
In a recent news release, Moorfields Eye Hospital Dubai outlines how they effectively treated a young girl for Stevens-Johnson syndrome, a rare and chronic disease that affects the eyes. About…
According to a story from Trend News World, mother Orvelina Lizeth Melendez is heading north as part of the migrant caravan that has been making headlines as it makes its way…
Neurofibromatosis is an extremely rare condition. Worldwide it affects just one in four thousand people. Gail Appelgren and Tim Golumbia are two of the individuals living with the illness and…
According to a story from Fierce Healthcare, the decision by the Trump administration to curtail planned efforts to update standards of care for people with disabilities means that this community…
According to a story from the Evening Times, Rebecca Scott was only in her upper twenties when she was first diagnosed with ovarian cancer. It is generally uncommon for ovarian…
According to a story from abc.net.au, Cyril Wise watched in horror as his wife Kaye died of Huntington's disease in 2014. However, before his wife's death, Cyril was struck with…
According to a story from greeleytribune.com, a couple has been working to form a nonprofit to help spread awareness about an unusual rare disease called achalasia, which can cause the…
A major genetic research project called the Deciphering Developmental Disorders (DDD) study is helping families to receive diagnoses, and, in some cases, even identifying new disorders. For more information,…
Randy Hilliard, a doctor of psychiatry and University of Michigan professor, awards his survival to the privilege of being so close to a worldwide known cancer center and having the…
For some fortunate individuals, cancer is kind of a foreign concept. They obviously know what it is- they hear cancer stories in passing, they may have donated to a charity…
All things Levi. Such a generally fun-loving little boy, yet such a complex bundle of medical conflagrations. All blended and tied up in a robust package that makes Levi a…
Looking back over everything, it all makes sense now. I have been stuck on this never ending roller-coaster for the past 6 years and I have been pushing hard to…
This story contains images of severe lesions and blistering. On the weekend of October 12-14th of 2018, Patient Worthy had the privilege of attending the International Pemphigus & Pemphigoid Foundation's …
According to a story from mirror.co.uk, Lee and Charmaine Taggart of Kent are the parents of Martha, a six year old girl who was born with Angelman syndrome. Martha's diagnosis…
My name is Lauren. I’m 24 years old and I’m an ICU nurse from Texas. Last May, I was diagnosed with postural orthostatic tachycardia syndrome (POTS) and inappropriate sinus tachycardia (IST).…
According to a story from The Examiner, Sarah Nauser-Olsen was at a great place in her life: she had a stable job as a police officer and was also well…
Ebony.com featured a story this September of a young middle school girl named Kennedy Cooper who has sickle cell disease (SCD). Sickle cell diseases are inherited disorders that affect the…
According to a story from Disability Today, Gary Campbell was just 30 years old, but his severe multiple sclerosis made him feel like someone who was three times older. His…
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