Health insurance. Ew, right? Totally. Health insurance is WHACK. Why you gotta know about health insurance right now? Mkay, I'm done with that. How was it, though? The lingo? Did I appeal…
Severe combined immunodeficiency (SCID)—one of the many forms of primary immune deficiencies. You may also know it as the "Bubble Boy" disease. Here at Patient Worthy, we've talked a…
When someone has too much human growth hormone, or GH, which is produced by the pituitary gland, the most frequent outcome is a disorder called acromegaly. It's debilitating, painful, and disfiguring--and…
When it comes to getting a rare disease diagnosis, not one person will ever tell it you it was a walk in the park. As Kathryn (a gold level patient…
Raising Awareness...Activism...Advocacy... Those are just some of the words we use to demand action from anyone whether it be world leaders, industries, friends or family. Every day we engage in…
Have you ever thought about blinking? Right now, try not to blink for as long as you can... You blinked, didn't you? That's the function of an involuntary muscle. You…
Just when things are getting nastier and nastier on the campaign trails for both Republican and Democratic Presidential candidates, and much to the the dismay of his Far Right Republican…
Are you available on May 14, 2016? Are you going to be in Jacksonville, Florida? If you answered a double "Yes!" get ready to make a difference in the lives of…
A recent event held in Houston, Texas, raised over $27,000 to help fund research and raise awareness about bone marrow cancer. The Frontier Fiesta 5K Run, now in its third…
Mika Covington was diagnosed with cystinosis when she was 10 months old, and has struggled with its effects throughout her life. Cystinosis is usually diagnosed before the patient's second birthday. It's…
Sjögren's Disease and Mastocytosis are two very different illnesses, but have one thing in common: they are VERY rare. The infographic below provides information about what the disease is, prevalence…
As a writer, every once in a while, I'll have an "A-HA!" moment: Usually when I realize my perception about something is off kilter, and the truth suddenly becomes apparent.…
RESEARCHERS BELIEVE SARCOIDOSIS IS ASSOCIATED WITH AN ABNORMAL IMMUNE SYSTEM RESPONSE, BUT WHAT TRIGGERS THIS RESPONSE IS NOT KNOWN. NOR DO DOCTORS KNOW WHETHER HEREDITY, ENVIRONMENT, OR LIFESTYLE AFFECTS THE…
Congratulations to Accelmed, the equity investors, who backed SoniVie, a startup company based in Israel that's made a breakthrough treatment device for pulmonary arterial hypertension (PAH). Of course, we owe a…
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