Kudos and congratulations to TV station, KCRA 3 for heading up a special blood drive! They put the spotlight on J.J. and Carson Huish, twin boys who have Severe Combined…
Orphan Product Extensions Now Accelerating Cures and Treatments Act of 2015 needs your help! Via Congress.gov the Open Act stands to accelerate cures and treatments for rare disease and it could quite possible double…
Liz is living with Cushing's Disease and is on a mission to be happy and well Patient Worthy is so excited to welcome Miss Liz Calabro to our family of incredible…
Photography by Sandro Georgi Photography Nolan is an incredible person and father who is living with dystonia. He hasn't let the movement disorder hold him back from anything, even running a…
The lymphatic system is the body's first line of defense against disease, so when lymphatic cells suddenly begin to multiply and overwhelm the immune system, it might be diagnosed as Castleman…
Last year, the International Rare Diseases Research Consortium (IRDiRC) has established a task force with the objective of promoting Patient-Centered Outcome Measures in the area of rare diseases. What it means is this: The conversation…
So, your child has just been diagnosed with common variable immunodeficiency, or CVID. You probably have A LOT of questions, which is only normal. Doctors can be a great resource when it…
Primary Immune Deficiency Diseases, or PIDDs, affect approximately half a million Americans, but there's a twist: There are over 200 different PIDDs, all of which are genetically passed along. Finding…
How much do you know about Gaucher disease? If you live with the condition or know someone who does, you might know a lot. But have you ever tested your knowledge?…
Si alguna vez hubo una "girl next door", Ashley Coleman seria la manifestacion de esta idea, una mujer joven y bella, de ojos brillantes, rubia y muy activa! Ella tiene…
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.…
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