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.
Tamara Isaacs Ciocci spent 21 years searching for a diagnosis for her type 1 Gaucher disease--despite the fact that her own father was a doctor. Although, that's not too surprising…
For more than half a century, Grandview, Michigan, resident Bruce Mannes has taken a drug Cuprimine (penicilamine) to manage his Wilson's disease, a genetic disease that prevents the liver from properly filtering the…
According to Cosmopolitan, Crista Procopio, a woman from Phoenix, Arizona, had a tough time getting through to doctors that the severe dizziness, pain, and digestive issues she was living with were…
When the word came out that a sick baby was in need of a bone marrow transplant and no one in his family was a perfect match, students at Emily…
Severe Combined Immune Deficiency (SCID), a primary immune deficiency, was once a fatal disease but is now considered a "pediatric emergency," needing immediate diagnosis and treatment. If it's caught right…
Every so often, actually more often then we'd like to think, the "suits" at health insurance companies sit down in their oak-lined board rooms and start flipping coins to see…
Acromegaly, also called gigantism, is diagnosed in only 1 in 20,000 people in the United States. In 95% of cases, it's caused by a benign tumor on the pituitary gland called an adenoma. Acromegaly causes…
Michael White, a 45-year-old writer from Vancouver, British Colombia, put everything he had on the line to take a leap of faith and write a book about his passion: music.…
Lysosomal Storage Disorder, or LSD, is a catch-all term for more than 45 inherited metabolic disorders that result in the build-up of various toxins in the patient's cells. Currently, there is treatment…
Sjögren’s syndrome is a chronic autoimmune disease that causes the body's white blood cells (the cells that ordinarily fight infection) to attack the moisture producing glands. Patients may have symptoms that include…
It's said that Nero fiddled while Rome burned--by comparison to a musician in China's activities during brain surgery, Nero had it easy. Imagine jamming out on your guitar while surgeons operate…
Natasha Lipman, a chronic illness blogger, was watching TV one morning, when something rankled her ire. The ITV show, This Morning, was doing a segment on whether or not children…
You spent years taking piano lessons, spent thousands of hours practicing, and were enjoying your professional career with an orchestra. Then IT happened. Every time you sit down on the piano bench, your…
When Jon Miller, president and founder of the Network of Tyrosinemia Advocates (NOTA), learned of a family in Puerto Rico who had moved to Connecticut to get treatment for their…
Leanna Mullen knows what it's like to look absolutely normal while in reality being very sick. She has Gaucher disease, a rare inherited condition where the body can't break down…
When 63-year-old Donald Castner of Napa Valley, California was diagnosed with idiopathic pulmonary fibrosis, or IPF, it came as a complete surprise. After all, he'd been active and in good health…
Last year, the FDA approved a record number of new drugs to treat rare diseases, according to the National Organization for Rare Disorders (NORD). In all, 21 "orphan" drugs were…
At the age of 10, Cassie Barnby began educating medical students about a rare disorder called tyrosinemia which affects only 1 in 120,000 people. Now 17, and a senior in high school,…
While some people thrive in cold weather, one Utah woman won't be out on the ski slopes anytime soon. Jaylyn Rogers is actually allergic to the cold and exposing her skin to…
Gun range employee Chris Twardy didn't know how many of his customers cared about him--but he found out and as a result he has a new lease on life. Twardy,…
When Cheryl Simoens was born, she became one of a small number of babies born each year with cystinosis, a chronic and genetic kidney disease. Cystinosis is characterized by an accumulation…
Myasthenia gravis (which is Greek for "grave muscle weakness") is a neurological disease that causes a person's voluntary muscles to weaken. It mainly affects women under 40 years old and men…
If you have familial hypercholesterolemia, or FH, having a doctor who truly understands the disorder is essential. In a short YouTube video, Katherine Wilemon, president of the FH Foundation offers some…
Researchers at Stanford University School of Medicine have discovered a gene that could possibly reduce the risk of cardiac issues, like heart failure. What's weird... it's the same gene, when mutated, that was…
Treatments for autoinflammatory diseases commonly require a patient to receive injections under the skin, which can be tricky if you are the parent of a small child (or large husband) who…
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