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.
By now, you may have heard of the website, Pinterest, which came to the public's attention in 2011. Or, you may be one of millions who actively engages with the…
Life would probably be easier for three-year-old Kayden Bell if doctors could determine a diagnosis for him. So far, he's been diagnosed with microcephaly, global developmental delay, hypomyelination and dystonia with…
With public perceptions changing regarding the use of medical marijuana (cannabis) in the United States, studies are being conducted to determine the possible disease states that could be treated with the regulated…
Some teenagers have trouble staying awake in class--but most of them have a fairly normal excuse: they stayed up too late. Then there are teens who actually do have a…
Noted Denver saxophonist Clare Church has played with some of the greats, including Tony Bennett, the Temptations, and Dizzy Gillespie, but two years ago something changed. In an interview with CPR.org's…
No matter what disease or disability your loved one has, being a caregiver is a lonely business. After all, aren't you the one who's supposed to hold it all together?…
Have you ever heard your voice on a recording and thought, "Is that what I really sound like?" You rehearse exactly what you want to say, repetitively hitting the restart…
Virginia Beach resident, Tina, has a motto: "I'm more than a conqueror!" Her medical journey began in 1993 when she started to experience the swelling of various parts of her body.…
When radio personality, Mike Farwell, and three of his intrepid listeners decided to give up drinking beer for 115 days (ending on Christmas) he asked the Block 3 Brewing Company in…
Dystonia causes involuntary muscle contractions and can result in abnormal posture. There are a number of different types of dystonia, and there is no known cure. Parkinson's disease (PD) is…
A recent report from the British Heart Foundation (BHF) stated many more people in the UK are at risk for early heart attacks than previously thought. The culprit? High cholesterol. And not the…
In the past, 14-year-old Louise Stewart-Scott, was used to flying through the air and across the mat during her gymnastic routines. But, at the age of eight, she was diagnosed…
Sam Bradley hit the dystonia jackpot, but that's not a good thing. Bradley won the NCAA record for the quickest (wrestling) pin in college, and is a black belt in karate,…
If you have narcolepsy, excessive daytime sleepiness, and/or cataplexy, you know how hard it can be to function in "real-world" time. And while treatments have improved, there is still no…
Over the past few years, Casey Higgins, a 27-year-old Ohio woman, has required supplementary oxygen 24/7 to help her breathe. Diagnosed with the genetic disease cystic fibrosis at the age of…
When you're competing in an important golf tournament, the last thing you want to worry about is narcolepsy and cataplexy associated with narcolepsy — but those are two very big…
What's all this about taking a bite of an apple then falling into a deep sleep for years and years? That's what happened to Snow White, and as far fetched…
You may not know Oliver Bailey personally, but he is one special boy. The brother of Tilly Bailey, who has one of the rarest genetic conditions in the world Neonatal-Onset Multisystem…
Neonatal Onset Multisystem Inflammatory Disease (NOMID) is one of the rarest genetic diseases in the world, but Tilly Bailey, 17, and her family know all about it. Tilly has NOMID,…
You may not know this, but a bean-sized gland, located in your brain (behind your nose and between your ears) secretes hormones that influence almost all of your body. What…
If you or someone you know has Ehlers-Danlos syndrome (EDS), you probably know a great deal about it, making you part of a very small population. Not many people have an understanding…
It's unfair, but Hollywood thinks narcolepsy is funny. Over and over, characters suffering from the rare neurological disorder are portrayed as buffoons, falling asleep face down in their chicken soup,…
If you live in Connecticut, and happen to have a rare disease, efforts are being made to help make your voice heard. When you're one in a very few, it…
Here's the scenario: a woman and a man walk into the emergency room with the same symptoms. Both have terrible pain in their abdominal region. The man is immediately brought…
What did Greek shipping magnate Aristotle Onassis, Academy Award-winning actor Sir Lawrence Olivier, and a four-year-old girl named Hattie, have in common? They all had or have a neurological disease that affected their muscles called…
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