The love between a father and his daughter is pretty unique. You may remember the story from a few years back of Emily Heaton asking her father, Jeremiah, if she…
Cancer treatment, much like golf, is all about the follow-through. It is true that chemotherapy and surgery are important. However, it’s the maintenance therapies that keep people living for years…
Confession time: I was a Trekkie. Yes, I lusted after Captain Kirk. But deep down my heart belonged to Bones, the smack-talking ship's chief medical officer who often saved the…
With the creation of a new hearing test, researchers in the United Kingdom may be one step closer to diagnosing early hearing loss in young patients with cystic fibrosis (CF),…
It pays to have a friend who's a research endrocrinologist—especially when you have a rare and little-known disease like acromegaly. For Oregon-based teacher, Betsy Whispell, the friendship was a lifesaver. She…
Little Emily Whitehead is looking attentively at a butterfly that has landed on her finger. She coos at it and lets it rest on the tip of her thumb peacefully.…
There's a whole lot more going on in your body than you know. Right now, trillions of microorganisms are hanging out in the gut (and elsewhere,) sustained in their own…
Batten disease, also known as neuronal ceroid lipofuscinoses (NCLs) is a fatal, inherited disorder of the nervous system. It involves a build up of lipopigments that accumulate and kill brain…
Proponents of medicinal marijuana got a little more ammunition earlier this year according to a blogger on Scienceblogs. However, some have claimed that cannabinoids cure everything from glaucoma to gallbladder,…
What do you do when you have a disease called acromegaly that causes you to keep growing into a 7'1", 346-pound force of nature? If you're Dalip Singh Rana (aka…
If you're a patient of rare disease, it's nice to know that there are medical professionals out there fighting for you. Check out what's happening in the professional world of…
Since my son was old enough to hold a video gaming system, he's been hooked. They're fun, challenging, and (sometimes) educational. I tell myself that video games may help improve…
A Swiss Army Knife®. A Leatherman® multi-tool. A Dremel® tool. We, as people, love to have tools with multiple functions. The Swiss Army Knife in my pocket boasts 19 tools.…
Why is there a growing trend of adults receiving care from pediatric doctors? Meet Rachael Goldring. She is a vibrant 24-year-old who has just spent her first year since birth…
According to the Times Recorder, Estelle is living with Tourette syndrome, which is a disorder of the nervous system. Those who suffer from the disorder exhibit uncontrolled, unwanted sounds or…
According to a press release on Newswise, there's a one-two punch that could save the lives of thousands of people living with drug resistant rare cancers. Researchers at UC San Diego…
An exciting new development came out of presentations at the European Society of Cardiology conference in Spain this past weekend. We often hear about how previously approved FDA drugs for more…
Want an excuse to get to Florida and learn more about the science of human genetics in society and health? Then we definitely have an event to tell you about!…
When I was a kid, my parents had one TV. It was a 19" black and white set with a rabbit ear antenna that only picked up two networks (when…
Adrenoleukodystrophy (ALD) is a genetic disorder that is very rare and usually occurs in childhood. People with ALD have two options for treatment, both of them less than favorable and…
We have reported a lot on the amazing possibilities that stem cell treatment offer the rare disease community. But something we assume, though we don't hear much about, is that…
Patient Worthy attended the National Hemophilia Foundation's 69th Annual meeting in Chicago and we are thrilled to report on some of the exciting new developments for patients with bleeding disorders.…
Bilateral deep brain stimulation (DBS) has been known to help with symptoms of dystonia. But for a form of tardive dyskinesia known as tardive dystonia, DBS hasn't been studied as…
The Myositis Association (TMA) supports the myositis community, helps to fund myositis research and increases myositis awareness. Registration is currently OPEN for their 2017 Annual Patient Conference. Details below: Who: The…
In a study supported by the National Institute of Health (NIH), researchers at Iowa State University found that a drug called A15/283 helped to ameliorate symptoms of a mild form…
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