It could be a story out of a spy novel: While coded messages are being passed, an outsider attempts to infiltrate and disrupt communication. Part of the mission involves smuggling important equipment…
Franciscan Institute for Science and Health in Steubenville, Ohio sponsors research on metabolic defects which can lead to rare mitochondrial related seizure disorders. While this is a limited rare disease program- if…
I’ve been using internet dating sites for the past eleven years. I have also been dealing with a rare and undiagnosed disease for the past five and a half years.…
Imagine for a moment what your version of a perfect life looks like. Perhaps it’s a glamorous life filled with fame and fortune, or perhaps it’s a life where you…
Ever have one of those days when you just weren’t feeling very enthused about your life? You know what I’m talking about. Those ho-hum blues. Those days when you don’t…
Let’s blow your mind for a minute. There are approximately 7,000 different types of rare diseases, and more being discovered every day. According to Global Genes, there are 30-million people in…
PatientWorthy is teaming up with CysticLife.org to spotlight some of the members in their awesome community! CysticLife.org sprang from a blog started by CF patient, Ronnie Sharpe, to track his life…
Ambry Genetics is a service provider to research and development physicians and patients. they've been around since 1999 and have become an authority and trusted source in genetic counseling. Ambry…
According to the Cystic Fibrosis Foundation, about 30,000 people are living with CF in the US and just about 1,000 new cases are diagnosed each year. Cystic Fibrosis (CF) is a chronic inherited disease.…
We’ve known for a while that the key to ensuring a richer quality of life for people with cystic fibrosis is early detection and treatment. Of course, that’s much easier…
Though she’s lived with cystic fibrosis since she was 17 months old, Olivia never thought of it as something that made her different. Growing up, her daily medication routine was…
10 Dinge, die mich das Leben mit dem Ehlers-Danlos Syndrom gelehrt hat 1. Spontan sein ist gar nicht schlecht Als ich jünger war hatte ich Listen und Pläne für…
I know. I know—nobody likes sifting through a bunch of scientific research “shtuff.” I sure don’t—especially when they don’t dumb it down for a layperson to understand. But when we’re…
One of the (many) things that makes cystic fibrosis so difficult to treat is that there are many mutations of the disease, some affecting very, very tiny subsets of the…
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…
Oh Canada, people think you’re all “please and thank you,” and maple syrup, but I know the truth: You’re a fighter and that fight is most obvious in the Canadian…
Only THREE more days for families, patient advocacy groups, and researchers to give input into NIH’s new initiative on undiagnosed disease research. Do you have ideas about strategy, metrics, approaches…
Gene therapy has been talked about for quite some time, but recent news has turned a hope into a reality for babies born with adenosine deaminase (ADA)-deficient SCID, severe combined…
Ignorance - Lack of knowledge, learning, information. Careless - Having no concern or care, not paying attention. When trying to find the perfect words to describe the youngest Jenner's latest…
In addition to NIH and NORD there are many university-based centers for rare disease. Today’s feature: The Boler-Parseghian Center for Rare and Neglected Diseases at The University of Notre Dame,…
Unless you live in a box (or don't frequent Amazon.com), it's Christmahanawkanzika time! The most wonderful time of the year! To continue the trend of the winter festivities, we wanted…
Doctor, please take my baby's blood! The IDF encourages Louisiana state officials to sign into law routine screenings of newborns for SCID, or Severe Combined Immune Deficiency. The IDF's ultimate goal is to…
When Skyelah was born her mother Angela immediately noticed something was different. She had three other children who had all cooed and smiled as infants. Skyelah rarely did, in fact,…
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…
Welcome to December 2015 PatientWorthians! 'Tis the season for sharing and do we have some stories for you! As we round #NERVEmber this week, we want to highlight some hope for our…
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