IPF: What You Need to Know About Benefits of Exercise
Listen up: Scientists in Japan may be onto something big. They’ve discovered there is a significant correlation between the amount of fat vs. muscle that people have and how it…
Listen up: Scientists in Japan may be onto something big. They’ve discovered there is a significant correlation between the amount of fat vs. muscle that people have and how it…
Broadway Belts for Pulmonary Fibrosis is a yearly musical and comedy fundraiser to fight pulmonary fibrosis (PF). Created 7 years ago to honor the memory of Associated Press theater critic…
Gorlin-Chaudhry-Moss, or GCM, is an inherited disorder that falls under the umbrella of craniofacial syndromes. While the fetus is in utero, premature closure between bones in the skull occurs, and that…
I read the most AMAZING post—and I mean AMAZING post (I am not kidding! OMG!) written by a woman who has been living with Cushing’s disease for less than 5…
We’ve all walked passed a seeing eye dog on duty. The ability of the dogs (and trainers) to learn and react to so much in a safe way is utterly…
El ha sido presentado en el National Geographic Channel. Le ha dado la mano al presidente Obama. Ha sido detenido por el servicio secreto. Incluso después de todo eso, Jason Dunn sigue…
Ohhh, I've got a spark for discussion. I’m verklempt after reading a post from a 30-something woman who is living with idiopathic pulmonary fibrosis (IPF). First, it breaks my heart…
On January 8, 2017, a man with one of the most brilliant minds of our age celebrated his 75th birthday. This, by itself, wouldn't be particularly remarkable, however the celebrant…
One of the most frustrating aspects of living with a chronic or rare condition is the financial stress it places on patients and their families. Doctor’s visits and prescription drugs…
Before 10 years ago, 40-year-old Cystic Fibrosis Advocate Jillian McNulty generally had her cystic fibrosis in check… so much that coworkers at the radio station for whom she worked for…
Después de ser diagnosticado con una enfermedad rara, a menudo hay un sinfín de preguntas que siguen: ¿Qué voy a hacer? ¿Qué es esta enfermedad? ¿Es curable? Y la pregunta…
Hereditary angioedema (HAE) causes unexpected swelling in the hands, feet, abdomen, and face. HAE can be fatal when the patient has a laryngeal attack, where swelling in the throat makes it impossible…
You can give without loving, but you cannot love without giving. -Amy Carmichael Don't Forget-- It's also National Donor Day. Give one of the ultimate gifts of love this Valentine's…
What at first glance sounded like nothing but good news, the FDA's approval of an Duchenne Muscular Dystrophy drug, has complicated undertones. It was announced last week that Emflaza (deflazacort) was approved…
The first time I encountered him, I stared at him, mouth agape with genuine shock on my face. He could not fail to notice my expression. Thankfully, he didn’t take…
Recent studies show that there may be a new treatment option for people who have specific forms of hereditary early-onset Parkinson’s disease. It’s actually a new twist on an old…
¿Qué pasa si vives con dolor crónico todos los días - y no sólo pequeños dolores, pero dolor de nivel 8 en una escala de 1 a 10? Kirah DeCarlo…
While discussing stem cells can immediately polarize a conversation, the promise they offer could silence the critics. The ability of stem cells to become other types of cells is well…
One of the biggest misconceptions around idiopathic pulmonary fibrosis is that once you get the diagnosis, exercise is off the table and there is nothing that you can do to…
Close your eyes. Now imagine what it would be like to have a hand swell to two, three, or four times as large as it normally is. It could happen…
The first medication to combat spinal muscular atrophy (SMA) has recently been approved by the United States Food and Drug Administration. It is approved for use by children as well…
12-year-old Sarah Stone has had sickle cell anemia for as long as she can remember. She experiences a lot of pain, takes lots of medicines and has had many surgeries.…
Got the post-Superbowl blues? Then check out these uplifting rare disease stories! One amazing young woman with cystic fibrosis got a sweet shout-out on Super Bowl Sunday, and another older…
Life has its obvious defining moments: graduation, our first house or apartment, falling in love and getting married, seeing loved ones pass, memorable trips, finding success, experiencing failure. The list…
With a title about courage, you might think that I am going to write about facing fierce enemies, not running from brutal battles, and boldly standing on blood-stained ground in…