Aidan Jack Seeger was a curly-headed, blonde boy with incredible blue eyes. At age seven he succumbed to a rare disease called adrenoleukodystrophy (ALD)—only 11 months after his diagnosis. Had…
Epilepsy is a general term for a variety of conditions that misfire in the brain's neuroreceptors. Before the condition was studied scientifically, people often thought that seizures were anything from…
Happy Labor Day Weekend! It is our hope that all of our readers are safe and sound with family this weekend. Given the tragic hurricane flooding in Texas (and India)…
Researchers at The Ohio State University Wexner Medical Center are curious about how nicotine may effect patients battling sarcoidosis. Sarcoidosis effects everyone differently. It occurs from excess granulomas, often resulting in…
Time is running out to register for #PHAontheRoad in Pittsburgh on Saturday, Sept. 9th at the Hyatt Regency Pittsburgh International Airport hotel. This is the @PulmonaryHypertensionAssociation’s last “on the road”…
Before I tell a story (that I first read in The Globe and Mail newspaper) about Joaquin Farias and his years-long quest to unlock the mysteries of dystonia, I must…
When it was “that time of the month” nearly everyone around me knew it. My parents knew that my snarky responses had less to do with my attitude and more…
A team of researchers at the University College of London (UCL) looking at the genome of childhood-onset dystonia patients has stumbled on a startling discovery: 28 of the patients had…
I remember when the local news reporters interviewed my parents as a child. They asked the caretakers many of the questions at the time. People want to hear the story…
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…
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…
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!…
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