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…
Where in the world is IPF? To help raise awareness for IPF this September, take a picture of yourself at a popular destination and use that location to help raise…
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.…
Kids with rare diseases will often be dealing with doctors for their entire lives and helping them find their voice along the way is important. Letting your child speak to…
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.…
Síndrome de Muckle-Wells Es raro. Es real. Está listo para causar inflamación excesiva a lo largo de todo el cuerpo con síntomas tales como fiebre, artritis, y malestar general. Esta…
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…
Bravery is something rare disease patients know a lot about. They may be scared before a procedure, and understandably so, but more than likely they've done their research and they're…
"You'll be fine. You're just depressed." How many times have you heard a doctor tell you that—when you KNOW something is seriously wrong? Marilyn heard the exact same thing. "I ain't…
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…
Inmunodeficiencia Primaria y Disautonomía - Vivir con una enfermedad raraIlana Jacqueline se parece a una mujer joven perfectamente sana, pero las apariencias pueden ser engañosas. Tardó 19 años para que…
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…
You're probably thinking "Yes, I would like to know what that causes... but first of all, what the heck is TFAP2B?" TFAP2B is a gene that has a hand in…
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:…
Family members can offer emotional and moral support during trying appointments but they can also be your back-up. If you have a lapse in memory or aren't sure how to…
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…
The first paragraph of the myasthenia gravis (MG) “Fact Sheet,” created by the United State’s National Institute of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) and posted…
La enfermedad crónica puede ser difícil de explicar a su hijo. La rareza y la persistencia de la condición, así como las limitaciones que se les imponen, pueden ser difíciles…
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…
There are only a handful of people in the entire world with Char Syndrome. Char Syndrome happens when a person is born with mutations in the TFAP2B gene, which hinders the…
Jules Perez-Montiforte was described by her family and friends as the center of the party. Just walking into a room, she would illuminate everyone with a smile. But even though IPF…
Being compassionate and willing to lend a hand can make someone else's day but also impact your own. Even in illness, when many tasks aren't plausible, there is often a…
If this makes sense to you, “Hey, look! Some dude on a sponge has wiped out and is going over the falls on a hollow little right!” then you need…
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