When I first read this story in Fortune about the Zika Virus potentially being used to treat a rare form of deadly brain cancer called glioblastoma, I immediately thought of…
The Indiana Hemophilia & Thrombosis Center in Indianapolis has long been a leader in innovative patient care. They teamed up with MicroHealth, a company founded by hemophilia patient Aaron Craig…
This year marks the end of a second decade of achievements for EURORDIS, now formally known as EURORDIS-Rare Diseases Europe. EURORDIS is a non-governmental alliance that is the voice of…
In the world of medical science, there's theory and there's application. Many scientists and researcher make amazing discoveries, but few find applications that can really transform lives. Hans Clevers is…
In our derisive political environment, it's hard to find something everyone can agree on. But this month--Ovarian Cancer Awareness month, to be exact--party lines are coming together to heighten knowledge about…
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…
If you are living with myasthenia gravis (MG) or any other rare disease or medical condition, you may have the travel bug, and travel insurance may be worth the investigation. Let’s…
When you need help with a problem, where do you turn? Many people these days turn immediately to the internet. From Googling to settle a bet to researching a doctoral…
Exciting research is happening right now that could help thousands of children around the world with cystic fibrosis (CF). A group of scientists and researchers in Australia are determined to…
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…
On behalf of the CNF: Applications for the 2017 Harnett Mini-Grant: Now Being Accepted In January 2014, the Harnett Mini-Grant was founded by Mr. Michael Harnett, as an enduring memorial…
When I was undergoing a tough treatment and reeling from the death of my God-sister, I was definitely down in the dumps. I couldn't really walk and I was hooked…
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…
“Don’t fight the problem, decide it.” George C. Marshall was not known for backing down from any fight. It was most certainly drummed into him from his military training, but…
It's National Immune thrombocytopenic purpura (ITP) Awareness Month! In honor of ITP awareness month, here are some ITP facts from the 2017 PDSA Conference in July: The conference kicked off…
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…
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…
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