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…
Happy Friday, Patient Worthians! This week, we have a video from a PKU patient telling a first-hand account of the deterioration and serious consequences he faced after he went astray…
According to an article from news-medical.net, researchers are beginning to delve into the causes of a rare lung disease called primary ciliary dyskinesia. This research is revealing previously unknown information…
The biotech company Myonexus Therapeutics may soon begin clinical trials for muscular dystrophy gene therapy treatment after obtaining nearly $2.5 million of investments. The research behind the new treatment was…
Nothing prepares families for the myriad of tests with strange sounding names that are required when they start to look for solutions to the problems brought about by a member's…
According to an announcement from ema.europa.eu, the European Medicines Agency (EMA) recently granted market authorization for a new treatment for alpha-mannosidosis. The new drug is an enzyme replacement therapy called…
Sophia Campa-Peters, a little 9-year-old suffering from a rare disease that resulted in several strokes, had a successful brain surgery just a few weeks ago, as reported Lubbock Online. The…
University of Glasgow scientists might have just come across an incredible new approach to providing patients with pharmaceutical medications on demand, reported first by International Business Times. This new technology…
Zaida was 3-years-old attending her normal yearly check-up with expectation that all was well, yet they quickly learned six days later of her terrifying cancer diagnosis, reports Daily Camera. Little…
Easton was born at thirty-six weeks gestation on January 6, 2017. He was almost immediately taken to the NICU for something called PPHN (Persistent Pulmomary Hypertension), Easton was intubated for…
February 14th is Valentine's Day! Make sure to treat your valentine to a special day - and while your at it, spread the word that February 14th is also National…
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