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…
Facebook has been making changes to how content will be shared on people’s newsfeeds. These are designed to help users connect more with friends and family, and limit the number…
The Noah’s Ark Foundation For Sickle Cell, an NGO based in Lagos, Nigeria, is working to support people with sickle cell disease. In a recent interview with the Nigerian Tribune,…
Hannah Evans, a 27-year-old woman from South Wales with several rare diseases, has reached her £37,500 fundraising goal that will support her trip to America to access an experimental and…
Lisa Clayton has been diagnosed with cancer as many times as she's given birth. She's a mom of 5, and she has just heard the news "you have cancer" for…
September was Childhood Cancer Awareness Month and Sickle Cell Awareness Month. To mark to occasion, the Aflac Cancer and Blood Disorders Center at the Children’s Healthcare of Atlanta released a…
According to a story from The Atlantic, the continual development of gene editing technologies like CRISPR have the potential to cure a substantial portion of rare diseases that are linked…
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