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.
Back in 2009, a nasty strain of the flu, namely swine flu, raced around the globe knocking people down like bowling pins. The first reports of this new flu came out…
When Hagan's mom tells the 12-month-old Irish boy that he's one in a million, she isn't kidding--and it's not exactly a compliment, either. Those odds refer to the fact that…
"I wish people would just take five minutes to look up Ehlers-Danlos syndrome to raise awareness." These are the words of 15-year-old Mya Lilly Hurst, an Australian girl who suffers from…
Hanna Gully was a girl with a dream: one day she was going to travel the world, and dare to do all of the things she had set her mind…
When you have a rare disorder like CRPS, or Complex Regional Pain Syndrome to the uninitiated, going to the emergency room can rival Alice's adventures in Wonderland. First of all, few members…
Complex Regional Pain Syndrome, or CRPS, is a chronic neurological condition that usually affects a patient's arm or leg, but can present elsewhere on the body. While the medical community cannot…
At 23, Jessie Brenholt should be busy planning the rest of her life, such as marriage and having a family. Instead, the 2012 graduate of Le Cordon Bleu College of Culinary…
Recently, the Immune Deficiency Foundation (IDF) was invited to try for a grant sponsored by PI CONNECT. The grant would allow the IDF to study the compared effectiveness of antibiotic treatment for…
For many people in the rare disease community, becoming a medical detective is a matter of necessity. You read everything you can get your hands on, then burn up the…
For many people suffering from rare diseases, gene therapy offers the hope for relief and perhaps a cure for their particular condition. But while many studies are underway, to date, few drugs have…
Eight years ago, Gina Rosendall-Saucedo received a diagnosis for her persistent movement disorder that she never expected. After an 18-month search for answers, she finally had one, but it was…
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