As someone who went through long-term antibiotic treatment, I can speak to the tremendous financial strain it had on my family. Well, if you live in Massachusetts, new legislative action…
Glucosa. Esto significa que el azúcar, ¿verdad? Está en su cuerpo, ¿verdad? Pero, ¿cómo se transportan y cómo sabe que su cuerpo la cantidad que necesita para el transporte? Lo…
And now for something completely different… It gives me great pleasure to present my list of VIII (a.k.a. eight) things you have to wait for…and ONE very big one you…
Si usted es una de las pocas personas en EE.UU. que viven con el síndrome de quilomicronemia familiar (FCS por sus siglas en ingles), lo más probable es que usted…
Welcome to this week's Editor's Choice! Those with acromegaly have a few options for treatment. Pituitary surgery and clinical trials for new drugs are two of these acromegaly treatment options,…
Hunter Syndrome, is a heartbreaking twist of genetic fate, and we celebrate that the FDA has granted Rare Pediatric Disease Designation to REGENXBIO's RGX-121 Gene Therapy. Hunter Syndrome causes seemingly…
Is it just me, or is EVERYBODY talking about vitamin D deficiencies these days? Suddenly, everyone I know is coming back from their health check-ups with prescriptions to combat their…
Q: What does an autoimmune disease that primarily affects tear glands and salivary glands have in common with a James Clavell novel? A: Nothing, really—other than the fact that the…
Jake Krahe, un joven de Montville Township, Ohio, ha estado viviendo con una enfermedad rara desde que tenía 19 meses de edad informa 19 action news. El diagnóstico específico es la…
If you are a rare disease sufferer in the midwest, then you should know about the US Pain Foundation's Pain Treatment Expo in August. So why go? You may find…
When people hear the word “Parkinson’s disease” (PD), they are likely to conjure an image of trembling and unsteady gait. But Parkinson’s disease has many manifestations that strike individuals unequally…
Fifty years ago, a baby born at 22 weeks didn't have a very significant chance for survival. It wasn't until the early 1970s that specialized equipment was developed to take…
Like most little boys, six-year-old Maddox Klossner loves being outside and in constant motion. Maddox has cerebral palsy as well as a form of epilepsy called Lennox-Gastaut Syndrome; both conditions were…
When you believe in fairy tales, anything is possible. When you believe in modern medicine, there are some limitations. However, the new use of low-dose naltrexone might seem like a…
Could slowing the progression of Huntington's Disease (HD) be as simple as using a really bright light? Not quite. That's an oversimplification, but let's break it down. In April, researchers…
Happy August Patient Worthians! We hope you're able to keep cool in this current heat wave. This month is Autoinflammatory Disease Awareness Month and we want YOU to know how to get involved.…
Anyone living with acromegaly should understand their treatment options and why they're being proposed. The UCLA Pituitary Tumor Program has a video outlining some of the treatment considerations for acromegaly. It's…
Last November, Janet Woodcock - the Director for the FDA's Center for Drug Evaluation and Research - gave the keynote address at the Pulmonary Fibrosis Foundation's summit in Washington, D.C.…
Welcome to this week's Editor's Choice! Mysthenia Gravis has to be treated delicately, as it's unpredictable and often incredibly painful. That's why the blogger we've highlighted below wants you to…
Do you know how rare diseases are classified as such in the United States? If a disease affects 200,000 people or fewer, it is considered "rare." Acromegaly, cystinosis, and Gaucher…
I love 2001: A Space Odyssey as much as the next person, but sorry, not sorry, despite what it and so many other movies would lead you to think, the…
The FDA: created to protect public health consumers by assuring the safety, efficacy, and security of medications, devices, food, cosmetics, and other products. No, I did come up with that…
Hey, have you had your recommended daily outrage intake? No? Oh goody, because I have a dish rich in awful for you! There’s a story out of Australia (National Motto:…
Confession time: I am a gamer. Not only am I gamer, I’m a dorky gamer (which I swear is not a redundant statement). So, admittedly, when I stumbled across this interestingly-named…
You all remember the ALS Ice Bucket Challenge don't you? Well, according to the NY Daily News, researchers at The University of Massachusetts Medical School have discovered the gene that is responsible for…
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