Okay... I'll be the first to admit my diet needs improving. I'm more likely to reach for a bag of chips than a bag of carrots and, if I'm hungry,…
Most people do not enjoy going to the dentist, but for patients with down syndrome, this normal task is even more of an ordeal. Patients often have a difficult time…
An easier diagnosis may be coming for ulcerative colitis patients, as researchers at Georgia State University recently used a special type of spectroscopy to examine the blood serum of mice…
***Deadline for registration before the meeting: August 21 After this date, registration can be made onsite. Come explore the host city of the Olympic Games and one of the most beautiful…
As I was reading a post about Ehlers-Danlos syndrome on Stanford Medicine's Scope blog, a particular line caught my eye. The author of the post writes about "the moment [EDS patients] open our eyes…
Spasmodic Torticollis/Dystonia or ST/Dystonia, is a non-profit organization whose aim is to support patients suffering from ST, also referred to as cervical dystonia. Dystonia involves involuntary muscle contractions that may…
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”…
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…
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…
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),…
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…
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…
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!…
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…
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…
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