Even though August is officially Psoriasis Awareness Month, Healthline recently put together a list of the top online advocates in the psoriasis community that are bringing awareness all year. Here…
As a child of the 70s and 80s, I’ve lived long enough to see my geeky obsessions burst out of the shadows into mainstream pop culture and profitability. Take comic…
Patient Worthy Partner and rare cancer advocacy group The International Waldenstrom's Macroglobulinemia Foundation (IWMF) is partnering with CancerCare to bring you an event on October 4th that you won't want…
Happy Friday! This week, we have an inspiring story about a woman who is battling cystic fibrosis but she's river dancing her way through it! We also have some news…
The concept of “race” occupies a perilous crossroads at this moment in American history. Some would argue that we live in a “post-racial” world since the election and re-election of…
Acute diagnosis is the Holy Grail for all illnesses and conditions. But what if you could predict the likelihood that you would develop a deadly disease and take steps to…
If you or a loved one has acromegaly or suspected acromegaly, then this is a free webinar you won't want to miss. The webinar is hosted by the Pituitary Network…
Whenever it comes to a controversial issue, I always ask myself: Who benefits? In most cases, it’s not all that hard to figure it out. But sometimes, it seems like…
At 26 weeks of her pregnancy, this mom knew her baby had serious health concerns. Baby Mayana’s ultrasound was showing her intestines were not inside her little body. They were…
Gene therapy is rapidly shaping up to be the next stage in the evolution of treatment for a wide array of conditions. And it makes sense: rather than treat the…
I love coming home. Don’t get me wrong, I get a great deal of satisfaction from working a solid day, but I really appreciate when I take the first steps…
This August, it’s time to spread the word about a rare disease that may not be that rare after all. It’s called autoinflammatory disease and is actually a category of…
Having a chronic condition can be a scary thing, especially for a child. For a parent, hearing such a diagnosis can be devastating. Words like childhood cancer, protein C deficiency,…
Batten disease is one of the rarest diseases in the world. In fact, it only affects about two to four out of every 100,000 births in the United States, which…
If you've ever been curious about muscular dystrophy, now is the time to learn because August is Muscular Dystrophy Awareness Month! Chances are, even if you think you have no…
BIG NEWS in the ALS community this week. As reported by NewsWise, researchers at the Mayo Clinic and St. Judes Children's Research Hospital have discovered the dysfunctional cellular mechanism behind…
I attended the 2017 CRN Family Conference in Utah this July. As someone living with rare disease who is older, (I am in my early 30’s with a disease which…
According to some Finnish researchers, children with heterozygous familia hypercholesterolemia (HeFH) should use statins as a treatment with caution. Though they have proven to be able to lower lipid levels…
My 4-year-old son went through a phase a few years ago where he had to clarify everything he said. “Momma, that car was blue. It wasn’t green. It was blue.”…
Dorothy was spot-on: There’s no place like home. As we journey through life―dodging the occasional wicked witch―it’s comforting to know that a cozy bed, loving arms, and perhaps even a…
There are certain doctor’s appointments that I dread. The top three appointments that can cause me to lose sleep include annual OB/GYN visits, mammograms, and eye exams. For me, my…
In very recent news, the biopharmaceutical company Chiasma, Inc. announced that it has come to an agreement with the US FDA regarding the design of a phase III clinical trial…
If you or someone you love has been diagnosed with idiopathic pulmonary fibrosis (IPF), it's easy to become discouraged by the lack of medical options. Although almost 50,000 people a…
In a study at the University of North Carolina (Chapel Hill), researchers found that there may be a much more effective new way to isolate lung stem cells in order…
Hereditary Angioedema, or HAE, is an extremely rare genetic condition. Patients with HAE experience swelling under the skin in possibly many different parts of the body. Individuals with HAE do…
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