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…
In 1901, a German ophthalmologist named Karl Stargardt reported the first case of macular degeneration in a child. Today, we know this is very rare in children. Approximately one in…
Patient Worthy’s very own contributor Iva Rauh, with a tiny nudge from Patient Worthy, attended the International Pemphigus Pemphigoid Foundation’s Conference in Lubeck, Germany. Who better to learn about the latest developments than…
September is Global Pulmonary Fibrosis Month. If you or someone you know and love has a form of this devastating disease, you know how important it is to spread awareness…
Primary immunodeficiency diseases (PI) are a group of more than 300 rare and chronic disorders where part of the body's immune system is missing or does not function properly. Since…
Recent findings from research done at the University of Pennslyvania indicate a new biomarker associated with a group of rare metabolic diseases called mucopolysaccharidoses (MPS). A biomarker is a measurable…
A new study shows that two specific compounds found in common sunscreen are actually effective as multiple sclerosis symptom suppressors. These two substances are salate derivatives and are also part…
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