Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.
Does this word "Musashi-2" mean anything to you? If you suffer from aplastic anemia, it may be the most important phrase you'll ever learn. Scientists are very familiar with Musashi-2 and…
When you have a rare disease, your money goes to a lot of different things that people without health problems don't have to cover. Like medicine. Or therapy. Or hospitalizations. Or...…
What would you do if Princess Leia suddenly went pale and passed out right in front of your eyes? Well, Crystal Caldwell's mother had that experience years ago while taking…
It's that time of year, again, folks. Yep, it's time to CHECK FOR TICKS! These tiny little predators can pack quite a wallop if you get hooked up with the…
Let's say you broke your left ankle three years ago, and according to all x-rays, it healed beautifully. So why are you still in pain? And not just a dull…
Finding treatment for a rare disease like CVID can feel like a dice roll. How can you find an effective treatment if doctors don't know exactly what's wrong with you? Dr. Harry…
There are lots of things you want to pass down to your kids: Intelligence Athletic ability Creative talent Amazing good looks Pompe disease isn’t one of them. Pompe disease occurs…
Myasthenia Gravis (MG) is a debilitating neuromuscular disease characterized by muscle weakness that gets worse during periods of activity and improves after resting. It is sometime fatal because the muscles…
Chronic granulomatous disorder, or CGD, is an inherited immune disorder where certain cells (called phagocytes) are unable fight bacteria and fungi. Symptoms include swollen lymph nodes, pus-filled bumps beneath the…
Common variable immune deficiency (CVID) occurs when the body doesn't produce sufficient amounts of certain antibodies (also called immunoglobulins) in the liquid part of the blood. The result is the patient's immune…
I read an article about several people in Norfolk who were having their benefits cut by the government, and silly me, I assumed I was reading about people located in…
To understand the rare disease Amyloidosis, you have to understand the underlying cause. When bone marrow produces an abnormal protein, called "amyloid," it can be deposited in virtually any organ or tissue in…
What the heck is a nanoparticle? It sounds very Twilight Zone-ish, and in some ways, nanoparticles are just that. The thing is, nanoparticles are the movers and shakers of the biologic…
Toronto street artist, Victor Fraser, is on a mission—and that mission recently took him to Paris. In the wake of the November 2015 terrorist attacks that left 130 dead and…
When she was two years old, Terry was diagnosed with tyrosinemia, a rare metabolic disorder makes the body unable to break down the amino acid tyrosine. Tyrosine is an important building block of…
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…
Say all you want about the threat of robots taking over the world—technology is making lives easier for those of us who are human. And humans who suffer from ankylosing spondylitis, psoriatic…
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…
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…
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…
If you're like me, you nearly jump out of your skin when somebody makes a loud, unexpected noise nearby. Like the sneaky garbage truck that silently slides up to the…
Imagine, if you will, that you've just been diagnosed with common variable immune deficiency, or CVID. The doctor has answered your most basic questions, and now you're on your way…
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…
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