According to a story from Newswise, a recent study shows that Merkel cell carcinoma, which historically has affected only a few thousand people per year, is becoming more prevalent, especially…
Tomorrow is Rare Disease Day! There are 7,000 rare diseases and disorders that affect about 30 million Americans. Three hundred million worldwide are affected by rare diseases and 95% of those…
Meisyn Ellison, a 13-year-old in Utah, adopted from China, battles the debilitating effects of her rare disease and now seeks to find her biological parents in hopes to give doctors…
Jahkee Johnson, a 16-year-old from Cedar Grove High School, is exceptional and accomplished for many reasons, beyond the fact that he tackles challenges and goal without the help of legs,…
You'd be excused if many (or even most) of you have never heard of this rare disease - which is why it's important to observe rare disease awareness months. Marfan…
CNN published this incredibly story about love and bravery earlier this month - and it's worth a second look. Sophia Weaver was born with deformities to her hands, feet, and…
Ever since New Brunswick 3-year-old, Zaccari, was born, they knew he needed a new kidney. CTV News Atlantic originally reported that Zaccari was born with congenital nephrotic syndrome, a rare…
These days it’s difficult to walk through a public gathering and not see a "Keep Calm and Carry On" T-shirt, poster, coffee mug, or bumper sticker. As a catchphrase originally…
For the longest of time, written wills were the go-to method for granting a patients end-of-life wishes, yet now videos are becoming more prominently used, originally reported by Times Herald-Record. Today…
Last year, then sixteen-year-old Joshua Martineau who has Kabuki syndrome and Tourette syndrome, had a challenging experience at his local Cineplex. According to ChCh, Joshua was excited to celebrate his birthday. He…
It's no longer Valentines Day, but we're still sending love to the rare patient community! It's been an exciting week for Hemophilia B patients waiting for a new treatment! We…
February is Turner Syndrome awareness month! Turner Syndrome is a chromosomal condition that affects approximately one in every 2,000 women. The condition occurs when a woman lacks all or part…
This Wednesday, the last day of February is internationally-recognized Rare Disease Day - a day when we realize that in fact - rare diseases are not so rare. There are…
According to a story from the Sun Herald, one in ten Mississippi residents suffer from one of the 7,000 diseases that are considered 'rare' in the United States. In the…
The Mercury News originally reported that a new cannabis based drug found success with reducing epileptic episodes in patients with Lennox-Gastaut Syndrome. They hope to have the drug available on…
According to a story from CNNMoney, Scott Gottlieb, the current commissioner of the US Food and Drug Administration (FDA), said that he plans to curtail high drug prices and go…
Talk show titan Wendy Williams (How you doin'?!) announced at the top of her daily talk show that she has been diagnosed with the rare disease Graves’ disease and hyperthyroidism. Graves' disease…
Prince William has taken the last several months to get out and educate himself in worlds he's unfamiliar with. Today reported his recent venture to observing robotic surgery, which came…
February 28th has become an internationally recognized day for Rare Disease awareness and advocacy. Originally reported by Rare DR, Marquette University, in conjunction with Harmony 4 Hope, H4H, will put…
The Lewis family has lived through it all. Their first born was diagnosed with spinal muscular atrophy (SMA) and did not live long, having passed away in 2013, reports Deseret News. And…
The O'Sullivan family had three very healthy babies before Drake was born. His blue eyes energetically said hello and his weight met all health standards, yet it wasn't until three…
According to a story from news-medical.net, a recent study that the reduced expression of miR-125a-5p results in an increase in the concentration of the protein TIMP-1. Prior research has associated…
February is Eisenmenger Syndrome Awareness month. Eisenmenger syndrome is very rare and devastating, so it deserves our attention. Let's get to know a little more about this heart condition. Eisenmenger syndrome…
February 16, 2018 Governor Herbert Declarations: Rare Disease Day on February 28th Undiagnosed Rare Disease Day on April 29th Park City, Utah. (February 16, 2018) – Rare and Undiagnosed Network…
Dangerous forms of brain cancer such as glioblastoma are almost impossible to treat. However, new research by Dr. Roel Verhaak could change that. Glioblastoma is the most aggressive form for…
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